“Meeting and holding Tyrell for the first time. It was the greatest moment of my life. My first born grandson. The moment I saw him I felt the most unexplainable love in my heart. He was perfection and so beautiful.”
It was Mother’s Day and we happened to be at church. They most often times play a short video for special occasions such as was the case that day. They showed the faces of smiling children and mothers in different stages of a child’s life. It just portrayed the enjoyment of the bond that is shared by a mother and her child throughout their development. All the little faces growing into maturity. That is how it should be. There is however, hardship in every person's life along the way. Of course, some families face difficult challenges that others will never see. Some are forced to take a journey that they would not wish on anyone else. That is the way it is for a family that faces Batten Disease.
Why am I passionate about these families? Certainly, there are other subjects to talk about. What attracts me to their stories? I am by nature a sensitive and passionate person. When it comes to causes, I am either all in or all out, with nothing in between. My emotions get stirred up when I think about the details of each journey and what it is like to go through it. The challenges faced, financial and otherwise, and sacrifices often made. The determination to do the absolute best for each child. The undying love that is shown. These families have become my rock stars because of all that they go through. The love and pure devotion that I see in them towards these children.
This next story takes place in the country of South Africa. In Cape Town nonetheless. You can see that it is a beautiful place. Even from this distance, with the help of technology, you can tell that Cape Town and South Africa as a whole, has a lot of natural beauty. The region in where Cape Town is located is rich in natural resources. It is also rich in history and many have traveled it's coastlines by ship. I am no history major but when I think of Cape Town, a movement named Anti-Apartheid comes to mind. When viewing tourism websites for Cape Town, I see stunning shoreline views and attractive urban settings. Yes, it looks like Cape Town is a beautiful place but it is also the place of a beautiful story.
Gino Arendse and Jade Harker met in high school in 2007. They quickly fell in love. You see Jade caught Gino’s eye as he found her to be extremely attractive. Gino's own good looks were complimented by his raging sense of humor. He made Jade laugh as soon as they met and his ability to do so is still his trademark today. They would discover that they had so much in common.
Their initial love for each other turned into a relationship that lasts. In fact, they recently celebrated ten years together. They love each other every bit as much and more than when they first met. From the beginning, they had plans for a family. Their desire was to raise up three children into adulthood. They wanted each one to be strong and independent, as well as, successful. Gino and Jade promised each other that they would always be together, no matter what. And so, that was the basis for them wanting to start their family.
Tyrell Jaden Arendse was born to Gino and Jade on March 10th, 2010 at Karl Bremmer Hospital in Cape Town. He was Jade and Gino's first born son and he was so perfect in every way. It was after midnight when the nurse handed Tyrell to his parents but the time didn't matter to them. Time stood still in that moment as they gazed upon that perfect little creation. Gino's words as he held his newborn son were simply “Wow! He is so so cute” He was adorable!
Life was good for this young family of three. Both Gino and Jade were employed and enjoying their life together with little Tyrell. Their family would soon increase in size as Jade was expecting a new little brother for Tyrell. They were absolutely excited that their family was soon to increase in size. All was going according to the plan that they had set for themselves. Little Tyrell loved playing soccer. His parents had seen how much their son enjoyed it and they planned on encouraging him in this area. Gino would tell me: “Due to his passion for soccer, we always intended on investing in his passion and to send him to a school that's sports orientated in order to excel in his passion.”
Gino and Jade's joy was multiplied by two as they soon welcomed into the world another beautiful baby boy. Tristan Margino Arendse was born on November the 13th of the year 2013. Both little Tristan's parents, and all of their family were overjoyed with the birth of Tristan. Among them was Gino's mom, Jo-Ann, who was very close to Gino and Jade. As one would expect from such an attractive couple, little Tristan was just beautiful to behold. Everything just seemed so good at that moment. And in fact, it was!
Tristan's first days at home were so busy but things were good. However, one week after the family brought him home his big brother Tyrell started to show symptoms of a disease. The family had absolutely no idea what was taking place with Tyrell. They had no idea at the time but they were at the very beginning of a journey that they would take together. This journey is experienced only by families who's children have Batten Disease. It is a very rare disease occurring in an estimated 2 to 4 of every 100,000 live births in the United States. It is more common in other parts of the world, however it is still a rare disease. The disease occurs only when a child inherits two copies of the defective gene, one from each parent.
Can you imagine what that must have been like for this young family? To go from experiencing the extreme joy of welcoming a new baby into the world to the utter bewilderment of not knowing what was taking place with with big brother Tyrell?
As would be the case with most any family, Gino and Jade sought the help of the medical community there in Cape Town. Things became very hectic and frustrating as they sought after answers for what Tyrell was experiencing. As with most any child that begins with this disease, that would include seizures. As is always the case, the search for answers begins with misdiagnoses. The medical community as a whole is not educated well enough to know what they are dealing with at the disease's onset. After all it is rare.
Tyrell's grandmother Jo-Ann was very much involved with the family and Tyrell's journey from the very beginning. She loved them all so much and was very close. She, along with Gino and Jade, had to deal with the initial frustrations of not knowing what was happening. As Jo-Ann would tell me: “When Tyrell became sick, well it was not easy. That I can say. To see Tyrell having the most unexplainable symptoms of some kind. Not knowing what's wrong with him. Then the seizures started, which was the most horrific experience ever. Hospital, in and out. Doctors saying what they thought, at the time, what was wrong. Answers that didn't make sense at all.”
I take it from reading Jade's comments that the majority of healthcare is provided by the government in South Africa. That can often times lead to an inability to provide everything that is needed to deal with such a disease. This is in part what she would tell me: “South Africa. Its a beautiful place. But the government is not that helpful and useful. That's why its important to have medical aid here. Government hospitals are terrible. You wait hours, days, even months to get helped. Service is very poor..... Some medication the government gives, but not everything. Also, the medical system does not cover everything which means you end up paying for the stuff. Medical supplies is also a fight to get paid for.”
Tyrell would eventually receive the diagnoses of Late Infantile Batten Disease (cln2). As is the case in all children with this variant of Battens, Tyrell would experience having an alarming amount of seizures.
Tyrell started having Grand Mal seizures when he was three years old. The doctors did testing and noted that he had an abnormality in the right side of his brain. They also had put him on medication. He then started having seizures up to ten times a day. No medication helped. He would go on to have three types of seizures, Myoclonic seizures, Grand Mal, and Absence seizures.
Jo-Ann talked about what it is like to witness this as it was taking place: “I can remember when he was with me one day whereby he had like seizure after seizure. That day I kept him in my arms crying out to God, why God why? It was the most emotional moment in my life watching my grandson having these seizures....and here I am helpless (unable to help).”
The family would in the course of time receive the official diagnoses. I have now read many of these stories about families and their reactions as they receive the news. It always involves a young mother. Sometimes a father. Sometimes the story is about a grandparent's response. I mean, how do you go from having a seemingly healthy child in front of you to having one that is very sick with symptoms that leave you confused and disheartened. The news leaves you totally despondent. Your child has Batten Disease and there is no cure. It's fatal. You can try to control the symptoms but the disease will not go away.
Jo-Ann would put it like this: “It was very heartbreaking when we eventually got a diagnosis to his condition. That day when Jade phoned me to tell me...that's the day our families world changed completely.”
Jade says that her and Gino's reaction was that they were very very sad.
“We just burst out crying when the doctors told us and there is no cure. We sat and cried because we knew Tyrell would never live the same life again. The little loving energetic boy would become bedridden like he is now.”
How does Jade describe the journey? “omg I don't think there is even words to put it out there. It's the most cruel disease known to kids. It steals their childhood and then their lives. Its very sad that our son won't ever be normal again and play with his friends and brother. It was the biggest shock to us and heart wrenching feeling. This has been so tough for us a family.”
Like most families that have to deal with rare diseases in a child, it can bring some very serious circumstances with it. Gino and Jade have been through much. As was previously stated the health care system in South Africa has not been adequate when it comes to providing for all of Tyrell's medical needs and the family has incurred expenses. At one point, the couple and their children were actually evicted from their home because they couldn't pay their rent. I know that it is possible that they had some help from friends and family along the way, but it had to have been difficult nonetheless. On top of that they had at one point lost their jobs because they had to be at the hospital so much. Their employers just didn't understand what it is that they were going through. This seems heartless to me. They had to sell out things like cars, their wedding rings, and television sets just to survive and pay for items for Tyrell's health needs. Throughout all of this, Gino and Jade have stayed strong together. They are still very much in love with one another.
I was at work when I initially looked over Jade’s comments about their experience. I could feel myself getting emotional as I read her words but it was only during a short break that I glanced at them. I composed myself and went back to work. Later that night I was home with my special son Benjamin as his mother had gone to the store. At that time, I was able to read in detail what she said the family had been through. Eviction, sale of things as important as wedding rings to pay medically related bills, loss of employment. That is when it just got to me and I really just lost it for a while. I learn of more stories that are filled with similar heartache as I continue to write. A short while later, I was with my son in his room, having brought him a snack and I bear hugged him as I most often do. This time, however, I hugged him extra tightly. It happened to me again as I was writing this article. I think that is why I continue to do this. I really need to get into a different line of work.
Gino and Jade are gradually getting back on their feet as Tyrell continues to do battle with the evil monster named Batten Disease. As Jade put it, “We have now found a flat that a lady was willing to rent out to us, so we are thankful for that. And, we got jobs again and are trying to find our feet slowly, again.” They both now work for a logistics company.
I don't think that the family would be able to survive if it were not for the help of Tyrell's grandmother Jo-Ann. She provides the care that is needed when Jade is not home and also when the couple needs a break. I think that she must seem like an angel sent from heaven. In fact, This is what jade has to say: “She is a blessing to us and we thank God for her. When Tyrell started getting very very sick and we had to work she offered to care for him. She takes great care of him and is a big help. She loves him dearly.”
There are of course others that bring encouragement. Jade goes on to say, “My parents, my mom and dad, come and visit Tyrell and love him dearly also. He is very loved by his grandparents and so so so many people out there. Everybody he meets says he left a mark to stay in their hearts.”
Taking care of Tyrell has been a challenge for Jo-Ann, however, I am sure that it has been a blessing as well. I'll let her tell you in her own words: “Honestly it was not easy at the time when I made this decision because I wasn't sure if I'd be able to do a good job. I just asked God for his wisdom and guidance on how to care for Tyrell. It has not been easy. Long nights of stay awakes, always making sure he's comfortable and good before I close my eyes to rest. Nights where he has difficulty breathing, and then there are night after night whereby he can't shut down. I then talk to him a lot, sing to him, telling him stories, and reminded him of things he used to like doing.” “Although he can no longer talk, he reacts with his eyes when you talk to him. I always make sure that he feels loved and cared for and I won't change a thing. Caring for Tyrell...he's my strength and inspiration in my own life.” She reminds me of a couple of other extra special grandmothers that I know.
As for the little warrior named Tyrell, He continues to battle the evil monster named Batten Disease as he takes this journey with his family. His seizures are for the most part, controlled by a combination of three medications. They are Epilim, Urbanol, and Toplep. He does, however, have a tough time breathing. His family does everything they possibly can to keep him comfortable and happy. Tyrell is seen by three hospitals. Tygerberg hospital by Professor Van Toorn. Milnerton medical clinic by Dr Poole. And, Paedspal Palliative Care by Doctors Tracey Nupen and Michelle Meiring. He is just such a handsome young guy and he is so deserving of all the attention he receives.
Tyrell is one of only two known cases of Batten Disease in South Africa. The other Child's name is Jaden and he has a variant of Batten Disease which is called Late Infantile, cln8.
It is such a difficult journey for each of the families that have a child with Batten Disease. Some have to go through the experience more than once. The challenges become greater as the journey continues. All these lives are cut far too short. Progress is being made but for these families, it is painfully slow in coming. As far as these kids are concerned, none of their little lives will be lived in vain because of the impact that they have on their families and those of us that follow them. The way that they show us how resilient they are and the lessons that they teach us. These stories may all seem to be so tragic and, to a very large degree, they are. However, the lessons that are taught about complete love and sacrifice are to me unparalleled.
My hearts desire is to see a cure for Batten Disease. Clinical trials for at least two of the variants are taking place. Availability needs to be worldwide. Increased awareness is happening but much more needs to be done. I write these stories in order to honor the families. It's my small part and a privilege that I don't take lightly.
For Gino and Jade, things will not be as planned but this love story will continue. Tyrell will always live in their hearts and will be with them in spirit. Tristan will always have his big brother looking out for him. I have only just met Jo-Ann but I am so impressed and she has instant credibility with me for the way that she is caring for Tyrell. God Bless you Jo-Ann, Gino, Jade, and your entire family.
Be strong Tyrell and continue to do battle. You, one day, will have your reward.
I have never done anything as important as this.
Make sure that you visit Tyrell's Facebook page if you don't know about it already.
Tyrell"s fight against Batten Disease
Jade has an uncle that resides in the state of Ohio here in the USA. He has a pay-pal account that he keeps to help with Tyrell's needs. if you would like to help with Tyrell's expenses, you can do so by sending money through pay-pal to the account and it will be sent to the family. Here is his account: Louie@RedKeyProductions.com
I have set up a public Facebook page that is related to my blog. I hope that you can go to it and hit like!
I can now say that I have done a lot of different things in my life and that I have held many different positions at work and at home. I am a husband and a father. I am a Christian (that means Christ follower, although I don’t do that too well sometimes). I don't see why we can't sit down together and have a beer or two. Do you? Health wise, I am a cancer survivor and a diabetic. This is not that big of a deal. There are plenty of other people in the same boat but I am thankful for the years that I have been given.
I served in the armed forces of the United States through active and reserve duty for 8 years. I spent approximately ten years in Aerospace and Defense, working on things that many would consider critical to our nation’s defense. These days I work on helicopter components for a heavy lift helicopter company here in Oregon. I worked diligently on receiving my Airframe and Powerplant License. Receiving it has helped me provide for my family for over another ten years now. I have never been the best at what I do but I have always given it my best effort and have contributed to the team that I was part of. I have never made a ton of money. As a matter of fact, I am on the heavenly retirement plan. I hope heaven gets here before I am no longer able to work. Yes, I have a sense of humor.
So where am I going with all of this? Of all the positions of responsibility that I have held, the greatest position that I have ever held is that of being a parent. Specifically, A parent of a Special Needs person. More specifically, My son Benjamin. In my book this is a position of great honor. I actually have three sons. Benjamin has two older brothers. His oldest being Daniel and the middle brother being Kenny. I am so proud of Benjamin’s older brothers. I love and miss both of them. They are both highly intelligent people. They get that from their mother’s side. They both turned out to be successful in spite of my lack of parenting skills.
I have always loved being Benjamin’s daddy, although there have been challenges along the way. Because of Benjamin, I have developed a sensitivity towards other children and adults with special needs. (This as of late, has transferred to children that have rare and fatal diseases. Especially those affected by Batten Disease. These kids and their families have become my passion!)
Benjamin’s favorite place to go is this mall that we frequent. He loves the book store and all the sites that are there. He loves eating together at the food court, although he has problems keeping his eyes off of the girls when he needs to be paying attention to what’s on his plate. I notice that most people just give him a quick glance or a longer stare as we wheel him through the mall. However, every once in a while, we run across somebody that smiles at us or says hello. Sometimes, we run into another individual who is accompanying another special needs person. It might be someone with Cerebral Palsy, Downs Syndrome, or something altogether different. Smiles and hellos are exchanged. My desire is almost always to reach out to people to whom we have so much in common with. I especially have a thing for little damsels in distress. Hey, I am a guy. Just keeping it real! The term Chivalry comes to mind. Perhaps you will have to look the term up as it is somewhat outdated. It's meaning still fits today in some cases!
Benjamin is my heart. He was late in reaching all his milestones. He has never received an actual diagnosis. He saw a geneticist when he was really young but she was never able to nail one down. Benjamin is developmentally delayed and functions at different levels in all the different areas of development. He has been on seizure medication since he was very young to control them. He has autism and difficulties in the area neuro-muscular function. Benjamin learned to walk later than normal and now needs assistance when he is not near structure or furniture to aide him in maintaining his balance. He has always been good natured and happy. He is so funny and full of surprises. Benjamin communicates with us through a series of signs, gestures, and broken verbal exchanges. For example, he bangs his empty cup on the table when he needs more to drink. His mom reminds him to use his words. I remember the first time that he said the work cookie. (It was very recent. He said it with a “W” in it so it sounded like cook-wee. He has since corrected that but it still sounds very cute. As for his daddy, I kind of still like saying it the old way. Would anyone like a cookwie?)
As would any other parent in my position I have other concerns about Benjamin and our future together. My wife and I are dedicated to caring for this guy. He brings so much joy and laughter into our home. We made the unconscious decision a long time ago that we would keep him with us as long as possible instead of placing him in, say, a group home. He functions at a low enough level that it would be difficult for him to live outside our home. Plus, he would have to leave his little Man Cave behind. The care that he would receive in a group home would be less than he deserves. He would just sit and stair at the walls a lot of the time. At least that is my fear.
So I don’t worry too much about the things I am concerned about but they are concerns. What kind of an effect will all the years of being on seizure meds have on Benjamin’s body? Will he develop issues with his internal organs? What if he is experiencing pain and isn’t able to communicate it to us? Will his physical body deteriorate further leaving him difficult to care for in our advanced years? Will he live beyond us and then not be able to understand why his parents are no longer there for him? Will we have to say goodbye to him if he proceeds us? Not to mention that things aren’t getting any easier in this world to say the least. What about my retirement years when my income drops? Again, I don’t sweat these things. God is in control.
As of the time of the original version of Benjamin's Daddy:
One of my Facebook friends that has become increasingly more special to me is a lady named JoAnn. She is retired now and has a special needs son named Tommy. Tommy is 38 years old. The more I talk with JoAnn, the more that I feel we have in common. Tommy and Benjamin certainly have many things in common, although Tommy is a little older than Benjamin and functions at a lower level. Tommy was recently having issues medically that required him to be examined by doctors. (Revised since the original version of Benjamin's Daddy): It was determined that Tommy had an aneurysm that would normally result in immediate surgery. Tommy's situation, however was complicated. It has turned out that Tommy also had cancer.
According to JoAnn:
"He was too weak to have the surgery for the aneurysm so that never happened. He was a ticking time bomb and we worried the aneurysm would burst. Months later his tummy was very distended and hard and he was sent to hospital in much discomfort. We ended up allowing exploratory surgery even though it was a huge risk. We couldn't just leave him in pain. It was during this surgery that they discovered stage IV colon cancer that had spread."
His family’s worst fears were confirmed after consulting an oncologist. It was felt that Tommy would not be able to endure the treatment necessary to rid him of the cancer. Therefore, Tommy is in a hospice type of situation. JoAnn is currently awaiting his transfer to a facility nearer to her home. JoAnn and the rest of Tommy’s family are right in the middle of the type circumstances that we could face someday. Aside from the cancer, JoAnn deals with some of the same challenges that may await us. Again, I try not to stress over the possibilities, but the concerns are real. So, like many others, I am praying for Tommy, JoAnn, and the rest of their family. I am also praying for other families with members that have special needs and I try to stay involved socially and financially as I am able.
So where am I going with all this? I have a lot of things going on in life right now. My involvement with others that have similar circumstances, through social media, brings me the most fulfillment. I really enjoy being part of a community that seeks to bring honor to and care for people who should be societies most honored class of individuals. Most of all I love being Benjamin’s daddy. This isn’t to say that I don’t love my other two boys an equal amount, but they are independent and self-sufficient. It’s a privilege to care for someone that requires special attention. He SO deserves it!
Honestly, I think society should embrace individuals such as Tommy and Benjamin. I don’t want to digress here but I had a thought. I have heard it said that the “R Word” (retard) should be done away with. I would agree except for one reason. I think that people that stare or turn away from people with special needs are retarded. I would agree that some of the Special people in the world are hard to look at but these people should be honored and cared for. Even I find it hard to not look away in some cases. Parents need to teach their children this very thing. People should reach out to those who have special needs and seek to help as they are able. This help can come in many forms. A smile and a kind word cost nothing but can mean so much! Okay, I am off of my soap box now.
I decided to do a revision to my original version of Benjamin's Daddy because I wasn't able to do as much with my blog when I first started. Benjamin's Daddy was my first blog entry and I have learned a lot since that time. In the course of that time span, we lost Tommy to his cancer.
Tommy fought like a brave warrior. He surprised his entire family by fighting so hard and hanging on with everything that he had. In the end he received a heroes reward. I have no doubt as to where Tommy is right now. God loves children and those who are childlike. Actually, he loves all of us but especially kids! As you would expect, JoAnn has struggled greatly with the loss of her special guy. Just ask any parent that has lost a child to cancer or even Batten Disease. They will tell you that the pain never goes completely away and you never heal completely. You just learn to cope with the loss through whatever means that you can. JoAnn is in the process.
There is a lot of heartache in this world along with things that bring us a lot of joy. There are people that are hurting for sure. The very best reason for living this life is to live it for others. When it comes to social media there is a lot of abuse but there is also a lot of good things that are happening. The way it is used by people to stay in contact and to support one another is the best thing that I have encountered. It was through that avenue that I met JoAnn and a host of others. The list continues to grow but JoAnn will always be a good friend. We have both been the parents of Special Needs children and we think a lot alike.
There are so many Facebook pages that draw attention to people with special needs and also those who have rare diseases. My passion. Most, if not all, are worthy of our attention. It would be impossible to follow all of them but we can all do the best that we can. The least we can do is to be an encouragement to others and to be there in every way that we can. I take it very seriously. It is an honor and a privilege to be the parent of a special needs adult. Especially one that is as charming as my son is. Yes, I am prejudiced in that way.
I love being involved with people that are facing difficult battles with their kids. I have to say though that I also love being Benjamin’s Daddy!
A few pictures of Tommy as he was growing up!
In my blog titled, A Different Kind of Warrior, I talked about a man named Stephen Pecevich and his daughter Sydni. Sydni was treated for brain cancer. The treatment was successful however, it left her with very special needs. She continues to need medical treatment which brings mounting medical bills with it. Stephen has set up an account to help with the medical costs. He did this only when it became apparent that he could no longer handle the costs on his own. He is a really good guy and a devoted father of the rarest kind. Please click on the link below if you think that you can help. Thanks!