“That day I swore to Tegen if he would keep fighting, I would do anything and everything in my power to help him get well. And fight he did…”
Jennifer Fill Crooks
My life has never been the same since the time that I had first become aware. This, concerning those who battle Batten disease but also, concerning the fact that there are things out there that are more important than one’s own self-indulgence. There are things outside of one’s self that bring fulfillment to a person’s life. This world is so big and there are so many needs. And yet, we can only do our own part. Some have the means and the ability to do bigger things on the world stage. I have quoted something that I had written in a previous story a couple of times and I think that it fits here as well. It concerns something that I had seen and how it caused me to take action. The quote comes from a story called Lasting Impressions and it reads as follows, “The image is etched in my memory and it will forever be there. I had followed my Batten princess in her journey and I knew from what I was seeing that she had taken a turn for the worst. The post on social media told the story. This created in me a sense of urgency which caused me to develop a plan. I had to meet her and it needed to be soon. As a family, we had never traveled away from the west coast but we were going to make it happen.” As the story goes, we made that trip and my life has been very different ever since we did. I don’t mean to over dramatize things however, the event did have a major impact on how I now spend my time. It really did!
Don’t get me wrong. I am not changing the world by what I write but I hope that it has had a positive affect on my audience. It would be even better if I knew that more people knew about the families that battle Batten disease as a result of what I do (There are others whose stories deserve to be told and this next story includes some of those people as well). To know that people look beyond themselves because of reading these stories would be special to know about. I have a friend whose name is Sandy and her life changed in almost the same exact way that mine did. She traveled all the way from Down Under to the United States and the great state of Texas to be exact. She wanted to meet her personal Batten prince whose journey she had followed through social media. His name was Casen and his life greatly affected hers. That event changed her as well and it changed her focus in life. She no longer lives to indulge only herself and her interests extend beyond that of just her immediate family. Her introduction on her FB page reads like this, “I love people. They are my true passion. We are here for others, not for ourselves.” I love her intro! Please don’t get me wrong. I live for myself a lot of the time but I find personal fulfillment in knowing that I have done something to help someone else. This, by what I am doing as an advocate. All it takes is my time and sometimes, some of my resources. What I do has a small impact on the lives of others but I love being involved. My desire would be to do more but I do as I am able. I love being able to tell other people’s stories and this next story is no exception. The story itself is, in fact exceptional and it is so deserving of the time that it takes to tell it.
Let’s begin by jumping ahead to something that has just taken place. To know the full story would tell about the significance of the event. A little boy who was once left for dead in a small town in Ethiopia takes his first ride on a horse. This would take place with the help of two very special people on a ranch located outside of a city in the Northern part of Idaho USA. This story, which continues to be written, is not confined to just a single place. Knowing the full story shows how a chain of events that happen over the course of one’s life can sometimes turn into something that is quite beautiful. It shows how success can be used to benefit others who are in need of a helping hand and how pouring yourself out for others can bring so much joy to one’s life. Every once in a while, a person who has the means and the desire to make a difference comes along. That is the case in this next story and the story begins with a little girl. She had a vision for what she had wanted for her life and much of what she had wanted would all come to pass. To me, the story is amazing and it is a privilege to be able to tell it to others, even if only in part. The story includes horses and children, lots of each. It all, however, starts with this one little girl named Jennifer so let’s start by talking about her.
A Future in the Making
Jennifer Ellen Fill was born in New York city in the year 1973. From the very beginning, her life was looked at as being one that was filled with promise. That would in fact one day be the case. She would accomplish much in her life and the building blocks for what the future held for her would soon be set into place. One on top of the other. Everyone knows how strong ethnic ties are felt in a place like New York city. Jennifer’s mother was of proud Irish descent and her love of country would be passed on to Jennifer. This was so much the case that this love would one day lead Jennifer to obtain dual citizenship. I’ll try not to get ahead of myself though. Jennifer’s father was successful in business and his company did business in China and Hong Kong. This would lead Jennifer to experience much very early in her life. Her family would move to Hong Kong when she was very young and they would remain there until she was seven years of age. Her early exposure to the asian culture and the people in Hong Kong would serve to be a building block. At an early age, she would be influenced by her time abroad. It would begin to help shape how she thought in terms of having a family that is ethnically diverse. Seeds were planted.
Jennifer’s family would return to the states when she was seven years old. New Jersey is where she would continued to be raised and horses would then become a big part of her life. Jennifer’s mom had ridden horses as a young adult and she loved it. Again, her mom’s influence had a huge impact on Jennifer and she would take her first ride soon after the family moved back to the states. This also took place at eight years of age. Just like her mom, Jennifer loved riding and a lifetime of doing so started as soon as she mounted a horse for the first time. Another building block was being put into place as she was exposed to the world of equestrian events. Remember, Jennifer was and still is very proud of her Irish decent. Equestrian and horses in general are very big in Ireland. Here in the United States equestrian is confined to the horse riding community. In Ireland, it is viewed as a major sporting event and it is watched by many. As Jennifer would put it, horses are in her blood and it wouldn’t take long for her to start competing in the sport. She was competing by nine years of age. This was proof positive that she was passionate about the things she wanted in life and that character trait was revealed at a very early age.
Jennifer would continue to compete and attend school as the building blocks continued to be put into place. The more she rode and competed, the greater her level of skill as an equestrienne would become. As I chatted with Jennifer for this story I took notice of something. I noticed that she was extremely focused early in her life and she knew what she wanted. I was nowhere near as focused as she was in my preteen years. She was destined to do big things and more seeds would be planted as she viewed a billboard one day while in the city of New York. From the time that Jennifer was a child, she had dreamed of adopting one day. Her early years in Hong Kong had influenced her way of thinking and that was further helped along as she came across this billboard in New York. It was an ad posted for the sometimes controversial Benetton Clothing Company. The ad consisted of a banner which contained the images of children from all over the world and which were of various races. Seeing the ad led her to having a clearer idea about what kind of family she wanted as she got older. She wanted a family that was of mixed race. This is what Jennifer said to me as I asked her about that billboard, “I saw it and thought, those are my dream kids.” The dream would one day become a reality. Another seed had been planted in Jennifer upon seeing that ad and it would one day lead to other building blocks being put into place. She was only twelve years old at the time!
It was not only a dream for Jennifer to have an ethnically diverse family, it was also a dream to compete at the highest level of her sport. It wasn’t just a dream. It was going to happen. Jennifer was the type of person that was going to make it happen as she had that type of drive and determination. Life would move forward and the time would come for her to attend highschool. Jennifer would split her time in highschool by attending two different boarding schools, both of which she said were amazing. Jennifer would first be given a chance to attend a prestigious boarding school for young women named Foxcroft. It was located in the state of Virginia. In addition to giving girls an opportunity to gain an outstanding education, Foxcroft offered programs that are centered around horse riding. These programs are offered to students that are serious equestrian riders and also to those who ride only for recreation and leisure. This was perfect for someone like Jennifer and it would give her an opportunity to excel even further in her sport. I am certain that this was another building block for what her life would one day be about. Life lessons would be learned and the lessons learned as a result of attending this school would stay with Jennifer for a long time.
I don’t know how life could be any better for a young lady during this time in Jennifer’s life. She was living life to the fullest and she was at a school that promoted the things that she loved the most. Her goals remained the same at this time. She wanted to be an equestrian rider at the highest level and Jennifer was in the perfect place for working to achieve that goal. Her first two years of highschool went well but circumstances dictated a change in schools. She, however, would take things in stride as she was enrolled in a different boarding school. This one was named Windsor. Windsor was a school that was designed for kids who were gifted and intelligent but not necessarily excellent at rule following. It did not have an equestrian program but this did not deter Jennifer. She continued to ride and would find a part time job working at a barn after school. She also would continue to compete in equestrian events. I am sure that the time spent at both schools served an important purpose in her life and helped in her development as a person. Both schools taught her that hard work pays dividends!
It would soon be time for Jennifer to head west. It was after high school that she would move to Seattle, Washington. Jennifer was very close to both of her parents but they had separated from one another when she was in her early teens. Her dad was living in Seattle at that time and her mom in London. She was particularly close to her father at that time and had loved what she had seen of the city of Seattle at the time she visited him. She told me that she was a “hippie” kind of chick at the time and Seattle was the perfect place for her to be. That hippie chick still had big things waiting for her on the horizon and the building blocks to her future would continue to be built, one on top of the other. Jennifer’s goal was still to compete at the highest level of the equestrian sport. Working to ride and riding to compete continued to be the center of Jennifer’s existence. Her desire to have a family and those “dream kids” was still in the back of her mind and it would one day become a reality. Pardon the pun, but you can’t put the cart before the horse and her dream family would come in due time. As time passed, and Jennifer continued to compete, she would meet someone who would help take her to the next level of competition. That person would not only be responsible for helping her to get to the top of her sport. He would also become Jennifer’s life partner and means by which her other desires in life would be fulfilled. There was so much more to come!
Mike Crooks was an exceptional person within the horse community and he was also a really neat guy. Mike had grown up on Bainbridge Island, Washington and then in Seattle. He had been exposed to the horse community at a very early age as his mom was a very talented and well respected horse trainer. Mike would follow in his mom’s footsteps and would also become established as a trainer. He had started to work as a trainer at age 16 and was very well established by the time he and Jennifer had met. He was an outstanding horse trainer and the one that would help guide Jennifer to the top of her sport. Jennifer said that her and Mike were set up by a mutual friend. At the time, Mike had owned a farm in Kirkland, Washington and that is the same town that Jennifer lived in. Jennifer’s friend felt that her and Mike had to meet. She felt that the two of them would hit it off well and that would, in fact, be the case. When I asked if her and Mike hit it off quickly, Jennifer replied like this. She said, “in about three seconds.” They were perfect for each other. Mike would turn out to be the grounded type. He would be there to support Jennifer while advising her in all things horse like and also in life. He would be the steady one and Jennifer’s rock. They would spend ten months together and then became man and wife in February of 1997. Mike is an excellent teacher and trainer. Their being together would soon begin to make a difference in Jennifer as she continued to ride. They also would start a family together.
A Life Together
Mike had been 37 years of age and Jennifer was 24 when they married and he would bring two children with him to his marriage with Jennifer. One was his daughter Lauren and the other, his son Sean. Lauren is now 33 years old and Sean is 31. Mike and Jennifer would have two children together as well. Their daughter Ciara was born the day of September the 17th in 1997. She was followed by her brother Hunter. He was born on September the 24th in 1998. There was another person added to the family by means of another kind. Jennifer had a niece named Catherine. She would go on to be raised by Mike and Jennifer as their daughter, and she considers them to be Mom and dad. That right there is special and this was a very special family in the making. Their impact on others would be felt by many and not just in the state of Washington. Their reach would extend to places beyond as Jennifer’s desire to have a racially diverse type of family was still waiting to be fulfilled. Thinking about how busy of a family this was makes my head spin but busy they were. Jennifer would continue to train and compete and right there by her side was Mike. Jennifer said that Mike is the calm half of the equation that makes up their marriage and he would be her support throughout. Jennifer was destined for love. She was destined to love and to be loved in a way that never could have been expected. This would be in addition to the love that she already felt for her family as it was. Mike would be right by her side for all of it.
Mike’s ability to coach Jennifer would begin to pay off as her level of skill as a rider continued to increase. She had been competing at a lower level when they first met but as her level of skill increased, so did the level of competition. Jennifer had a desire to compete on an international level one day and she wanted to do so for the country of Ireland. For this reason, she would apply for and obtain dual citizenship. She would one day ride for Ireland as she competed at the top level. Within a few years, after meeting Mike, Jennifer would be competing at the “Grand Prix” level. This, she would tell me is the highest level on the national circuit. She would one day rise to the Olympic level in riding. But before that, her eyes would be opened by something else that would cause her to look at things on a world level. That would take place as Mike and Jennifer went through the process of adopting for the first time in a foreign land. Her eyes would be opened to the plight of orphans worldwide and life for this family would never be the same after they were.
Jennifer had competed at the international level for the first time in 2002 and this had been life changing. It would be with what took place next that Jennifer’s heart would be changed. This as they worked to complete the process of adopting their daughter Sophie in 2003. Because she had grown up as a small child in Hong Kong, the desire to adopt in China was desirable. Jennifer was able to convince Mike concerning the idea of adoption and they both agreed that China was the place to go. This lady with a huge heart was changed as she viewed the conditions surrounding these children for the first time. These were children just like those that she had spent her early years in Hong Kong with and they were alone and waiting to be loved by a family. Her immediate response was that she personally had to do something to help. Jennifer’s focus would soon be expanded to go beyond what she had already experienced. Those building blocks that had been put into place were being further built upon by this experience. Jennifer shared what her thoughts were as she stepped into an orphanage for the first time with the following, “that first time I walked into an orphanage and learned of the plight of orphans world wide, I knew that my life’s direction had just shifted drastically.”
Jennifer would come home from that first adoption with a new sense of direction for her life and she confided with a friend about it over coffee. She stated to this friend that she wanted to quit the family horse business, and competing in her sport, to start an NGO (Non-governmental organization) working in orphan aide. Her friend’s response was extremely insightful and I want to share what was said to Jennifer. It was stated in the form of two comments, both of which made great sense. Here is what was first stated, “You can’t just be impulsive here as at this point you have no backing to start an NGO. If you can make it to the International/top level of the sport, you will have shown people that you can achieve what you set your mind to.” This was followed by another key point as her friend continued with this, “You will also meet people who have the means to support you in your orphan aid quest if you work hard and are at that level”. I am certain that Mike agreed. This was solid advice. He must have felt that this was the way that Jennifer should proceed if she wanted to go in that direction.
This advice would cause Jennifer to regain her focus while also giving her expanded goals to work towards. Competing now had a purpose beyond bringing home a win. The advice given was something that would come to pass as future events continued to unfold. As Jennifer continued in the family business and in competition, her heart for displaced children in foreign lands continued to grow. She was destined to love and to be loved as the building blocks continue to be put into place. Mike and Jennifer would continue to adopt as they added Holly and then Kai to their family. Both were adopted out of China, Holly in 2005 and Kai the following year. This was a very special family in the making and one that would make a difference. There would be an addition to their family that was of a different kind and this took place in 2006. A friend of the family had found a mare in Holland that was of interest. Mike made the trip to Holland to evaluate the mare and to make the purchase. This, after putting together a syndicate to purchase the mare. Bringing this horse into the fold was another building block that would soon be put into place. This would be the horse that would take Jennifer to the very top level of her sport and the horse would be given the name Uryadi. As already mentioned, Jennifer’s desire would be to become a dual citizen, both of the U.S. and Ireland. She had wanted to ride as a member of the Irish team and had become a citizen of Ireland at age twenty-five. Her success would come with a combination of hard work and Mike’s training, but Jennifer’s rise really took flight as she began to work with Uryadi. The name of this mare would spread in the horse world along with Jennifer’s and together they would achieve success. Jennifer’s dream of competing for Ireland would be achieved while riding Uryadi.
Over the course of Jennifer’s career, she would compete in ten different Nations Cup competitions. It does not get any bigger than that on an international level for the sport of Equestrian. This would take place throughout Europe, Canada, and the United States. The success that Mike and Jennifer had sought together would be achieved while on the back of Uryadi. Competing brought with it fun times that would one day provide a lifetime of memories but this was not something that was done just to bring glory to the family name. Always in the back of Jennifer’s mind was the fact that she wanted to do more to help those that are less fortunate. She was thinking about those children that were trapped, many miles away, in orphanages throughout the world. She was competing for them also because doing so was a serious building block for what she wanted to accomplish for these kids. She was not yet in a position to begin her own work overseas with these children but she was working towards that goal. Mike and Jennifer did what they could as they continued to increase the size of their family through adoption. They would adopt their daughter Ruby out of China in 2008 as their pursuits in horse training and in competition continued. One has to wonder how any one family could keep up such a busy pace with all that they were doing. The fact is, they were keeping that pace and doing things well. As if this wasn’t enough, it was at this time that they decided to move their base of operation.
Competing with Purpose
It was also in 2008 that the Crooks family would move their operations to a farm outside the town of Sandpoint, Idaho. There were many times in which competitions would take place in Calgary and Sandpoint was half-way between Seattle and Calgary. The increasing cost of living in Seattle along with the fact that Mike and Jennifer loved Sandpoint led to their decision to move. There would be many more things yet to come as their family continued to grow both in size and in togetherness. This would all happen as a family from Sandpoint. Jennifer remained focused both in regards to competition and her mission to be involved in orphan aide. Another building block would be put into place as Jennifer read a book about a woman who ran an orphanage in Ethiopia. It was the first one started for children that had tested HIV positive and the book was titled, "There is no me without you". It was from that book that Jennifer would learn about the plight of orphaned children in Ethiopia. She learned that Ethiopia has a larger percentage of orphaned children than any other country in the world. This made her heart go pitter patter and the result would be a keen interest in doing more to help the children of that country. What might you guess would be the result upon Jennifer’s learning this fact? Mike and Jennifer would, once again, increase the size of their family.
This couple was a team and together, they would adopt Mahlia (now 10 years old) in Ethiopia. This would take place in the summer of 2009 and it was at this time that Jennifer would fall in love with Ethiopia after traveling there. She found the country to be beautiful and the people to be warm and friendly. Her eyes were opened to the fact that it was here that she could make a difference. This would not happen in full right away but another building block had been set into place. As Jennifer’s love for the country of Ethiopia grew, so did her love for her family. As a family, they loved what they were doing and they continued to adopt. That family that Jennifer had dreamed of as a child and young adult was now becoming a reality. She was gaining her dream kids beginning with her marriage and now through the foreign adoption. Her trips to Ethiopia would bring Jonah (now 12 years old) to the family in 2010. Following Jonah would be Millie (now 17) in the year 2011.
Even with all of these changes and new challenges, Jennifer continued to ride and compete in equestrian events at the highest level. The Olympics were coming in 2012 and it was her goal to represent Ireland at those games as part of the team. There was a lot of training and preparation that would take place and her hopes were high. The time that Jennifer took to train would help her to make it onto the shortlist to compete for Ireland. This, however, would lead to disappointment as the country would not qualify for the Olympics as a team. Even with this though, Jennifer would continue to compete on an international level. She was an Olympic class show jumper! Jennifer would continue to increase in terms of notoriety but being noteworthy had a purpose behind it. Certainly, she loved horses and the sport that she was involved in. People compete to win and winning feels good but just as her friend would tell her, people take notice when you do win. Her success and competitive spirit would help her to gain the backing that she would one day need. This, in order to help others on a larger scale.
Through her competition, success, and standing in the horse community, Jennifer would build a network of people that believed in her. She would soon gain the monetary support that would be needed to jump start her dream of making a difference abroad. It was a fact though, Mike and Jennifer were already making a difference through their overseas adoptions. The size of the family continued to increase as the number of Jennifer’s “dream kids” continued to grow. Together, she and Mike would add another daughter to the family in 2013. Jade (now 12) came to the Crooks family from China. What an amazing family it was, and it is still waiting to be completed! It would have been so easy to live for all that came with Mike and Jennifer’s Success in the horse world. Expensive vacations to far away places, material objects and pleasure could have been the focus when away from the stable. Instead, the focus was on others. Children that needed love and support were where the emphasis was placed. The big goal was to start working in orphan aid overseas and Jennifer's eyes had been opened to the fact that Ethiopia was a place that was in great need.
The year was 2014 and it was time for Jennifer’s vision for the future to become a reality. She explained to me that things would begin to come together with a fundraiser. It was held while she and Mike were at a competition in Canada. Just as was thought of years before, while having coffee with her friend. The people that made up the horse community would come through in a big way. This, as a sizable amount of money would be raised and the event would get things rolling. Jennifer was able to afford an exploratory trip to Ethiopia to view six potential sights on this first trip to the country. Their story in Ethiopia would include a heartbreaking scene at the beginning but the picture would soon change. Instead, it would become something that is beautiful. One of the sights that they visited had lost funding for the eighteen hungry children that were living there at the time. With them was a nurse who was the head nanny. She was known as Sister Amarech. One day soon, Sister Amarech would take on a significant role in the operation as a project manager. The building that housed the children was a less than desirable facility in town. Actually, way less! That building would one day be replaced by “a beautiful little family style village on a hill outside of town.” With humble beginnings, Jennifer would pour her heart into this project which surrounded these children that were so deserving. There had to be a name that was found to be suitable and it wouldn’t take long to come up with that name. Jennifer would gain non-profit status in both the United States and in Canada and the most perfect name would be thought of, Uryadi’s Village. This most noble cause would be named after a most noble animal. One that was largely responsible for Jennifer’s rise in the equestrian sport!
The operation known as Uryadi’s Village would continue to grow. This, both in its mission and in the number of children that would be loved and supported. I found a short statement in a message that had been directed towards Jennifer’s staff and supporters. In it, Jennifer outlines the goals that have been established for these beautiful children. Here is what it says, “The mission of Uryadi’s Village is to give orphaned children the basic necessities that every child deserves: proper nutrition, education, medical care, and a loving family or community-style living situation, allowing them to grow and blossom in an environment that will ultimately become self sustaining.” It would be one day soon that this mission to the children of Ethiopia would be eighty percent funded by people that love horses. This is exactly what her friend said could potentially happen if Jennifer stayed the course and would continue to compete. What is amazing to me is the fact that she would find success on several different fronts and do so with life becoming increasingly more complex. I am sure that she would tell you that things weren’t always easy and that Mike’s steady hand in their relationship would be key in their success.
As a family, there would be challenges that would come. This, as these beautiful children entered a new family environment in a land that was foreign to them. Jennifer would tell me that some of the kids got off to a really rough start but adjustments were made as the family stayed by each child’s side. I think that it is special that Mike and Jennifer’s biological children have been on board with this and that they are accepting of their new siblings. This is how Jennifer would describe the environment in brief, “Our children are incredibly close, bio and adopted alike. You would never know they were not all born in the same family, except by skin color.” She would go on to talk about how the bigger kids help with the younger and how they all have become the best of friends. I think that these kids would have to be thankful to be part of such a special family. Jennifer feels good about things and says that they “really have the best kids”. I will go out on a limb here and just say that I bet that Mike is a really great dad! Jennifer would tell me as much in this statement about Mike, “He is the most loving, hard working, dedicated father and partner. None of this would be possible without him by my side.” It would be an obvious truth that raising a family of this type would be impossible to do by yourself. Finding the love of Jennifer’s life at the time that she did was yet another building block that was put into place. To find someone that is “all in” as you work to fulfill your dreams is priceless beyond measure. That all came in the person of Mike Crooks!
Concerning those building blocks. The ones that had made up Jennifer’s life had been put into place for a reason. They had in fact, been built into something that is very significant. Jennifer was destined for love and she was destined to give that love to others. There was room for more as three more children would be added to the family. Tegen who is just now turning four years old came to the family in 2016. Little Ellie, who is now three years old, came to the family in 2017. Last but not least, is young Amber. She is nine years old and came to the family in 2018. She was adopted by the Crooks family while already in the United States. This, because her first family didn’t feel she was right for them. She was perfect for someone with a heart like Jennifer’s. As Amber came to the family, it was obvious. Jennifer had her dream kids, both bio and adopted. This family now had fiftteen children, eleven of which were by adoption. You have to be a special couple to create the type of environment that would now exist in this household. Each child in this family is an invidual story in itself and part of another bigger story that makes up the whole. Each one is special. Each has a story of their own to tell. Each found love that they were destined to experience within this family. There was obviously room for many in Jennifer’s heart but her heart would be affected by one in a way that was unique. This was for good reason. Sometimes, things that we feel inside ourselves cannot be described in full.
Jennifer had this to say about her son Tegen. This, as he was brought to her for the first time while she was in Ethiopia. “From the moment I laid eyes on him something in my heart flipped. I knew he was my son and I would do anything and everything in my power to save this precious boy who had been so cruelly abused and abandoned.” Once you know and consider the circumstances that surround this little guy, you can’t help but to feel something yourself. Every so often, we hear about things that are awful to think about. Most of us will push the thought out of the recesses of our mind. We do our best to get back into our happy place by thinking more pleasant thoughts. Tegen’s beginning is one that is very unpleasant to think about. There is much that is unknown and much that is better to not consider. Tegen’s story with the Crooks family began when he was ten months old. The story begins at a time that was soon after the start of Uryadi’s Village. The team had not yet moved into their new village complex as they were still in the initial facility. It was the last day that Jennifer would be present on her trip in June of 2016. Little Tegen had been discovered by an elderly lady as she was walking alongside of a ditch that was nearby. She had found Tegen at the bottom, cold, wet, and shaking. He was found whimpering, and covered in cigarette burns. It was obvious that he had been tortured and left for dead. Tegen had suffered and had been left to die. I cannot imagine a child experiencing such a fate and yet, we know such things happen.
Tegen would have perished on that summer day, except for the fact that he was destined for something else. Mike and Jennifer’s work had already been recognized by the people nearby and the woman that had had found Tegen brought him to their facility. His condition had been noted during his intake at the orphanage. He had been badly neglected and he was malnourished. Tegen was also suffering from neurological issues. Whether they had been present at birth or environmentally induced was yet to be determined. It makes no difference. If you didn’t want this child, wouldn’t it have been better to do what the elderly woman that found him had done? He could have been left at an orphanage instead of being sorely abused. Tegen’s story did not end, alone in a ditch, because he was destined for something else. Tegen was destined for love. Jennifer said that it was on that day that he stole her heart, never to give it back. It was a time in Jennifer’s life that was set aside for Tegen. All of the building blocks that made up Jennifer’s life had been set into place so that he could be brought to her on that day. It had to have been so hard to leave after seeing Tegen for the first time but it was the last day for her to be in Ethiopia. She was on her way to leave at the time he was brought to her. Jennifer left instructions with the staff to watch Tegen very closely as she was going to return in three weeks. She described her actions upon her return with the following words, “I returned to Soddo (our town in Ethiopia) three weeks later and after the six hour drive, went directly to Tegens bed. When I saw him I lost my breath. He was a skeleton, barely alive. I picked him up and took him to our local missionary hospital where he was immediately hospitalized.”
Tegen would undergo testing while at the hospital in Soddo. The results were both shocking and disheartening. This, although they were as would have been expected. Tegen’s blood work revealed a very high level of potassium in his system and a CT scan revealed general brain atrophy. It appeared that Tegen was giving up on life and was near death. Why would he want to live after what life had dealt him so far? Not having the tools to properly diagnose Tegen’s condition, it was felt that he was suffering from untreated meningitis. After two to three days of being watched, it just seemed that little Tegen was slipping away. Dr Michelle, who was an outstanding missionary doctor, was tending to Tegen’s care. She would suggest that Jennifer take Tegen to her home in Ethiopia because he wasn’t strong enough to return to the orphanage. This was against Jennifer’s rule for not taking orphaned babies home with her but in this case, she would make an acception. It was at this very time that Jennifer made her promise to Tegen. She would tell him that if he would just continue to fight, she would do everything possible to help him (All of this was happening as Mike was stateside in Idaho).
The end result would be absolutely amazing! Jennifer described what she had observed in Tegen upon their meeting. She said that his eyes were looking left with no real movement. He wouldn’t move his legs at all, nor did he smile or even cry. It would seem that little Tegen was in shock and why would he not be after all that had transpired. It is heartbreaking to think about it. Jennifer took Tegen home with her and gave him what he should have been getting as a ten month old child. Jennifer gave him the love and affection that he should have already been receiving. She showed Tegen an abundance of love and an endless amount of attention. She snuggled with him because she knew the power that her actions could have on him. It was also the natural thing for her to do! Jennifer repeats some of what I have written already with this quote but it is all worth repeating. Here is what she said, “In the next two weeks I was able to connect with my little TBear deeply and he began to come alive! He could not move when I first got him. Within two weeks, he was moving his arms and legs and starting to use his eyes. He was the sweetest little snuggler EVER! I was in love…..”. The bond that was created as a result is one that is powerful. This was Tegen’s time and his little life would forever be changed as he changed the lives of those around him.
Tegen had come alive and he would continue to fight his way back. Very slowly, he began to drink from a bottle. He could not yet swallow solid foods but he had begun to gain weight. Jennifer was overjoyed by what she was seeing but she felt that there was only so much that could be done for Tegen overseas. He needed to come with her to Idaho so that the family could help in his care. He would also get the medical attention that he needed so badly. Jennifer felt that Tegen’s health condition was not diagnosable in Ethiopia and this allowed her to receive an emergency medical visa for him. So it was in September of 2016 that little Tegen traveled to America where he would become the youngest member of the Crooks family!
What do you think happened as Tegen came home to Idaho and his new family? Tegen would thrive and become the object of his family’s adoration! Here it is, three years from the time that Tegen was first brought home to his new family and he has continued to gain new skills. He does have his challenges and he has overcome much! Tegen is mostly non-verbal but he has a way that melts you as he communicates with his eyes. The joy that he possesses speaks to you in a way that makes words not necessary. He has a giggle that he uses frequently and that giggle fills up the room when he does. Jennifer says that Tegen has astounded his therapists by not only surviving but also by thriving. Tegen is a warrior and he works hard at sitting up with his TLSO (Thoracic Lumbar Sacral Orthosis) brace. He walks using his gate trainer and he even tries to run. Watching him do these things warms a person’s heart. Tegen is a good little eater now. He eats soft foods and purees. He does have a Gtube for his medications and he also needs it on occasion to take in extra fluids. This amazing little miracle man has overcome much. He had a bout with necrotic pancreatitis and he beat it. Tegen started having tonic clonic seizures following a DTap vaccine required for imigration. Being the little fighter that he is, he would rebound from these. There are other instances that were near brushes with death and Tegen has overcome them all. The seizures that continue are managed with low dose medication.
The bond between Tegen and Jennifer began instantaneously upon first sight and it only gained strength in those initial days together. Tegen was healed by the love that he was destined to experience. He had to know that there can be joy in living. Once he was taught that, he would reciprocate that joy to others in a way that has to be experienced to know it in full. Tegen is Jennifer’s heart and it is not just her. He has shifted the hearts of his entire family. Everyone at the Crooks house understands the adverse circumstance that Tegen was brought out of. To come back from being abandoned and left for dead and to rise to where he is now just warms a person’s heart. He is so loving. In fact, Jennifer refers to him as an “amazing love light”. Tegen is a beacon that lights up a person’s world on the darkest of days. His laughter penetrates a person’s inner being. Jennefer’s shares a little bit about his impact on family and friends with the following, “Tegen is adored by his father and siblings. I can’t tell you how special his bond is with each member of our family. Tegen is also our medical recruiter for Uryadi’s Village. When a medical professional meets Tegen, they are drawn to the magical loving spirit of this little miracle boy.”
Jennifer had in mind early the things that she wanted in life. One of those things was to be surrounded by the children that made up a large, ethnically diverse, family. She found a man in Mike that shared that desire with her and they would go on to make a wonderful team. Jennifer would state that children are her life and not just any children but those which face special challenges. She is drawn to orphaned children and especially those who have special needs. She truly amazes me. The building blocks of her life have fit together in a way in which she could experience life just as she had desired to. The rewards of being involved in such a project brings to her life a ton of satisfaction and she says so with the following, “Being able to be part of a team who impacts the lives of the children in our village is a feeling I can’t find words for. It’s the most gratifying feeling ever.” She loves being a part of the team that makes up Uryadi’s Village and says that the project draws to it the most amazing people. As stated above, Tegen is the recruiter of medical professionals for the organization. The little guy draws people to the project in a way that takes no effort on his part. People are just drawn to him. Tegen has brought the attention of both a physical and occupational therapist, as well as a practicing nurse. All of these have become part of the Uryadi’s Village team. He has even brought two board members to the organization. Tegen is an icon for the village. His life has not only affected the activities around Uryadi’s Village, but he has done powerful things in the Ethiopian town of Soddo. He has opened the eyes of many of the people that make up it’s population. They no longer see children that have special needs as a curse or a burden. Many people now see these kids as being a gift from God. Make no mistake. Tegen is a gift from God and he was destined to be that! This little man has also shifted the hearts of people that make up the local community near the orphanage.
Just as it would be with most any parents, Mike and Jennifer looked for a diagnosis for their son. They wanted answers for what was taking place with Tegen. What about the seizures and the atrophy that had taken place in his brain? As it turned out, Tegen has Batten disease. Batten disease is a degenarative neurological disorder that is both rare and terminal. With all that had taken place and all of the things that this little guy had overcome. Tegen and his family would now be confronted with the battle of his life. Biological or adopted, It doesn’t matter. The reaction would be the same from any parent upon learning the news that their child has a disease that is terminal. Tegen had overcome so much and now he was battling a disease for which there is no cure. Jennifer stated that it was as if her heart had been “ripped out” upon receiving the news. The neurologist that had informed her of the findings had been very cold as he delivered the diagnosis. Jennifer would tell me that the doctor was a worst case scenario-ist type and he would offer no hope for little Tegen. Just like most all parents, Jennifer had never heard of Batten disease and there she was, alone to deal with the news. MIke was in tears upon hearing from Jennifer and this caused him to rush to be with her and Tegen. Something like Batten disease can break a heart that belongs to the strongest of men. Mike and Jennifer had already been through so much with Tegen and the hearts of the entire family had been endeared to him. Jennifer would state that the news concerning Tegen was a shock to everyone, including doctors. This was because he had gained skills and not lost them. While the diagnosis brought with it great despair, there was also hope created by news concerning clinical trials that were on the horizon. Tegen had been diagnosed with CLN1 Batten disease and there has been a lot of research put into a cure for this particular variant of Batten. There are two trials coming up in the near future and for the parents of these children, they cannot come soon enough.
Our hearts desire is that the trials would come quickly and that they would prove to be successful. Jennifer did begin to see some subtle changes with Tegen after the diagnoses and she fears that they may be related to the disease. She, however, still remains hopeful and much of that is due to what she sees in Tegen, each and every day. Here is what she would tell me about her outlook for Tegen’s future, “I’m able to stay hopeful and optimistic most days due to Tegen’s amazing and happy personality. I am encouraged by the fact that Gene Replacement Therapy is so close to being available for trial. When I think about what may happen down the road my heart just aches and my eyes spout endless tears. I pray with every ounce of my being that the cure will find my amazing TBear in time.” Her work for the children of Uryadi’s Village and her own family will continue. Jennifer loves each and every child that she comes in contact with but there is just something about this little guy that she calls TBear. The adverse circumstance that surrounded his beginning with life in combination with what he faces as a result of the Batten diagnosis makes your heart melt inside. Just seeing that smile on his face brings sunshine on the darkest of days.
Raising a Village
From humble beginnings and a deep desire to make a difference, Uryadi’s Village has grown and made it’s impact on the lives of children. Jennifer’s heart has realized it’s desire as things have progressed over time. I had learned much about the operation that is Uryadi’s Village by reading a message that Jennifer had written to her staff and to her supporters. From its start, which was in a single rented building that housed eighteen hungry children to an actual village. The operation that had started in 2014 has grown in its ability to help kids and the surrounding community. In 2018 alone, Uryadi’s Village was able to “meaningfully impact and change the lives of just over two hundred amazing children.” Construction projects have continued over time as the need for increased capacity and outreach to the surrounding community has been determined to be needed. Things like medical training and an agricultural outreach to the people nearby shows a commitment that has been noticed by the government in that region. This is on top of the tender care that is being provided to its smallest citizens. Uryadi’s Village seeks to place children in homes through foster care and local adoption, as well as, providing care at the village. This writer is a parent to one of the most beautiful of persons with special needs. It is for that reason that the commitment of Uryadi’s Village to serving orphans with special needs is so appreciated. They are the only facility in the region to do this. My hope is that more people will realize the value that these special ones possess through the actions of the Village. They can truly change a person’s way of thinking and can make this world a better place to live. Uryadi’s Village has visions for helping the people in the local community to become self-sustained through training and employment opportunities.
The organization continues to grow with time. Mike has been there as Jennifer’s rock and has helped to steady Jennifer. This, as the project has grown into something very special under her direction. How does she do it? Perhaps this is one situation where it really does take a village. Jennifer has a lot of wonderful people by her side, and also, wonderful people that are financial supporters of what is being done through Uryadi’s Village. Jennifer has been recognized by the boarding school that she attended during her first two years of high school. This, even though she had left to attend another school. The Foxcroft School honored Jennifer by naming her the Distinguished Alumna (class of 1991) for 2019. They recognized Jennifer’s work as an International Non-profit in helping orphaned children in Ethiopia. Jennifer’s heart for helping the ones that need help the most was recognized by the school, just as it has by all who know her. It makes sense that they would not pass up an opportunity to draw attention to such an outstanding person. One who has passed through the hallways of such a prestigious school as Foxcroft. It is always nice when a person is recognized for the things that they have achieved but Jennifer doesn’t do what she does for the glory that she might receive. She does it because she truly loves children. It is gratifying to anyone when they know that they are making a difference on the planet. Jennifer and her team are making a difference. Life is best lived when it is not about living for one’s self. This, as much as when it is about taking the opportunities that are given to be involved in the lives of others.
Jennifer had a strong understanding of what she wanted out of life from a very early age. It was through the adoption of her daughter Sophie that she was made aware of the plight of orphaned children in underdeveloped countries. Her heart was shifted at that time and she has acted on what she had been shown in a big way! Orphaned children will always be a part of who Jennifer is for as long as she is able to be there for them. This story is about an amazing family that is made up of children that come from both an adopted and biological origin. There is one very special little man in particular at Crooks’ house and he is the center of everyone’s attention. That would be Tegen! This, because the entire family knows what Tegen has been through and they also know about the battle that he faces. As a family, they all rally around the TBear. Jennifer and Tegen are inseparable. Where Jennifer goes, Tegen goes also. The bond between Jennifer and Tegen is incredibly strong and there is nothing that she wouldn’t give to see him win this battle. Mike’s strength is of great importance in the family’s fight against Batten Disease. Tegen is the perfect candidate for Gene Replacement Therapy because of his ability to fight back. Jennifer’s type of determination will serve to make sure that he is involved in the upcoming trial. That is, if at all possible. Believe me, it is more than possible! Jennifer shares her thoughts of hope and determination with the following, “We plan on beating this horrible disease! We work every day to follow Tegen’s lead and to be hopeful and happy. I can't imagine my life without Tegen. I don’t even want to go there. I do sometimes, of course, and it’s the worst feeling ever. I can't describe it (Just typing this makes me cry). So our plan is to beat this so that Tegen will go on being his super star self! I have friends who ask to hold him because they need him, not because he needs them. He truly is a miracle.”
I have observed the bond that most often exists between Batten warriors and their families. I have witnessed it online from great distances and even up close at Batten conferences. It never ceases to amaze me, although I understand it in part. These kids tug at your heart like none other (I know there are other little warriors in a similar plight). Jennifer does her best to describe what I am talking about with the following, “Tegen is my heart. I can’t describe my bond with him without tearing up. I am very close to all of my children, but I think it’s the EXTREME adversity that Tegen has faced (brings out my big ole Mama Bear feelings). This, combined with how hard he tries every single day, always with a smile. That makes him my hero. We sleep hugging as we are deeply connected. Tegen is my heart and he is my hero. He and Mike are my partners in all we do!” If I was at Mike and Jennifer’s house, I wouldn’t want to let go of Tegen either.
Tegen is so special and he was destined to be that! It is very significant to see him smiling and riding on the back of a horse in Idaho, USA. His is a life that almost was not. What a beautiful little man he is! Jennifer was destined to do this work and to be Tegen’s mommy. This all came about as a result of the building blocks that were placed in her life. That life would include Tegen, the most treasured gift. Life is much better when you live it for others and doing so brings with it, great rewards! Tegen was meant to experience the joy of living this life. He was destined to be loved and to give love back to others. What a little miracle man he is! This family’s story is amazing and It is a privilege for me to be able to tell it to others, even if only in part. Thank you for your time!
Blogger and Advocate
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017