What do I mean by a rare friendship? Well, I guess that it is true that good friendships are rare these days. We are all just so busy with work and family. The hustle and bustle of life often keeps us from slowing down long enough to find people that we have things in common with. You might develop a strong relationship with someone from church or a civic group that you are involved with. Maybe you were fortunate to move into a good neighborhood and there are people there that you just click with. Perhaps you are into social media and you have found a group of people that you fit in with. I feel that is the case with me.
You know what? It is so easy for people to live life for themselves and seek out all the pleasures that life has to offer. Of course, life is so much better when we have others to spend it with. I think that for me, the thing that I enjoy the most is the satisfaction knowing that I am a help to others. I guess that is true of a lot of us. Knowing that we have the respect of others because we made ourselves available for them is so gratifying. Maybe all we are able to do is to be an encouragement to a friend or be there to listen and give our point of view. Do you know how great it makes a person feel when they are told, for example, that they are someone's 'Rock'? A great source of strength? What about when we are there to help someone just vent or to find a solution to a tough situation?
Some of the best friendships and closest bonds that exist are ones that are forged during times of hardship and trouble. How about the friendships of warriors that have served alongside one another in battle? There may be no closer bonds that are formed than those that are forged on the battle field. Sometimes, difficult times are when you discover that family is not always a matter of sharing a bloodline with someone.
It was through a series of events that I discovered a community that exists as a result of shared experiences. This community is made up of people that have an extremely close bond. That bond exists because all of the people in this community have experienced the heart break that comes with being told that their child, or in some cases grandchild, has a rare and fatal disease. I am of course speaking about Batten Disease. There are other communities that have formed around other rare diseases but Batten Disease is the focus here. I am not a part of this community. I am only someone who has observed with much respect and appreciation what these families are going through. Some of the families in my blog have been on a journey with their child or grandchild and have lost the most precious of possessions once held in their arms. Still, others are in the middle of the battle. It is a battle. My title A Rare Friendship is not so much about the quality of good friendships being rare, although that may be true. Rather it is about a friendship that has come from dealing with circumstances that are rare and often times heart breaking. It is about a friendship that exists from sharing a common experience and the need to be understood. Only those who have loved ones with a rare and fatal disease can fully understand and appreciate what each other is going through.
Marlo Schinell and Dixie Bergeron are two such people. Their friendship spans the distance of close to a thousand miles. One lives in Virginia Beach, Virginia and the other in the small town of Petal Mississippi. I had intended on telling their stories individually. However, once I had heard some of the details of their individual stories I thought I would make an attempt to tell them together. I'll let you be the judge of whether or not I am successful in doing so. One story takes place in a big city on the east coast and one takes place in a southern town that has less than 11,000 people. While there are differences that may exist in both of these ladies lives, such as their upbringing and perhaps their level of education, the similarities of their stories are worth noting. Their stories are not centered around themselves. Rather they are centered around their children. You see they each have a son that has Batten Disease.
They understand each other in a way that only they are able to. Each one of them has a son that has a variant of Late Infantile Batten Disease. Each one went through an extensive search to find a diagnoses for their child. Both faced the devastation of receiving the news that their child had a disease for which there is no cure. Both are single mothers that warrior on for their children. They each have set aside large portions of their existence in order to give their child the attention that the demands of this disease requires them to. Both maintain public Facebook pages to honor their child's journey and to spread awareness about Batten Disease.
In the case of Marlo, She maintains a page called Hope for Dante'. This page of course is for her handsome son Dante' who just turned 15 years old. Dixie maintains a page on Facebook for her son. It is named Jacoby's Journey with Batten. Jacoby also recently celebrated his 15th Birthday. Amazing! Jacoby and Dante' are both known on Facebook for there great big smiles and charming personalities. As I had stated before both Dante' and Jacoby are battling a variant of Late Infantile Batten Disease. The struggles that are associated with caring for both of these teenage boys automatically connect Marlo and Dixie together. However, their constant contact throughout the day has drawn them close together in a bond of friendship that can only be matched in the community that they are a part of. Marlo has told me that they are in contact 10,000 times a day and that they are best friends. Marlo is obviously inflating the numbers a bit to get a point across. These two ladies spend a lot of time together each day through social media in support of one another. I have no doubt that within the Batten Disease community, there are many similar relationships. I had asked both Marlo and Dixie to tell me what each of their friendships meant to each other.
While Marlo has stated that Dixie is one of her best friends in the whole world, Dixie expressed the fact that having Marlo in her life is like having a “sister from another mister, lol!” You know what? Marlo would tell me the same thing about Dixie. She said this about her, “She is my sister from another mother with another color... need I say more?” Dixie states that Marlo is very supportive of not only her but also so many of the Batten families. And Marlo, in response, reciprocates the sentiment about her friend. Concerning Dixie, she states that she is one of the strongest women that she knows, and says that “she picks me up when I am down”. Marlo says that Dixie is one who will show what genuine love and friendship is made of. Dixie would tell me that Marlo always makes time for her even though she is busy being the “bestest Batten mommy”. Marlo says that Dixie will always give her what the situation is, “raw and uncut”.
You have to be in a similar situation as another person to completely understand what the other is going through. That is especially true in a situation such as theirs. Dixie puts it like this, “In our situation a listening ear that understands where you are coming from is invaluable and I thank God for putting her in my life.”
I know that I always run the risk of drawing a comparison that I don't have a right to when bringing my son into an article like this. But I do so in an attempt to understand what these families go through. For the few that haven't read any of my blog entries yet, I am stating again that we are parents to a special needs adult male. His name is Benjamin and he is the center of our attention. He is a very fun guy to be with. Well, most of the time. His favorite place on the planet is a mall that we frequently make trips too. There is so much scenery here in Oregon when we go on our drives together, however, his favorite scenery is at the mall, lol. We think that he is a really nice looking guy but the looks he gets when we wheel him through the crowds are varied. Most people either look the other way or stair momentarily. Some smile. Every once in a while we will run into a person with similar circumstances. They may be wheeling their special needs son or daughter through that same mall. When this happens, eye contact is made. Hellos are exchanged. Even if a conversation is not started, there is understanding for the other person even though you may not know what they have been through.
In the case of someone who cares for a child with Batten Disease, they have a very accurate understanding of what someone else in the Batten community is going through. That is because the course that the disease takes a child through creates the same set of circumstances for each child which is under a person's care. This is especially true when we are talking about the same variation of Battens. It all starts with the symptoms and the search for a diagnoses. Every single story that I have read or talked with a person about starts with a search for answers and it is completely frustrating. It always starts with an exhausting search that brings with it a wrong diagnoses from a medical community that frequently doesn't know what they are dealing with. If the child is at an age where they are enrolled in school, then educators will be involved. Lets start with Dixie and her son Jacoby.
Dixie tells me that it was around the age of four years old that her son Jacoby was diagnosed as being ADHD. This was due to behavioral issues that he was having. His speech was also starting to slur. She stated that he had been tested at school and that it was determined that he had "developed mild mental retardation " Dixie said that she wanted to laugh right in their faces as she was told that but instead she told them the truth. “I, however, simply stated that you don't just develop that.”
Dixie continued her search for answers. She said that by the time Jacoby turned 7 or 8 his movements became uncoordinated and clumsy. She was again being told things like he was just being a boy but this mommy knew better! As She watched her son decline, she decided that it was time to turn to the medical community. She opened the phone book and searched for a pediatrician. Not having a referral to a doctor, she simply closed her eyes and touched a name in the phone book. Dixie knew that something was seriously wrong with her son but she was “brushed off” by the doctor who stated that Jacoby just needed to see an orthopedist because of his clumsy movements. Dixie insisted that she be given a referral to a neurologist. She stated that she would either be given what she wanted or she would go to someone who would. And so after debating with the doctor for a few minutes, she was granted her request and was given the referral that she sought. I can't begin to tell you how much respect that I have for this dear lady just after knowing this.
This would take Dixie and Jacoby to Neurologist named Dr. Mark Lee. Dr. Lee was skeptical at first as well while Dixie explained that she felt that something was going on with her child's brain. Dr. Lee would evaluate Jacoby at that time and then have him back to his office in another six months. Dixie stated that the doctor was all on board at their return visit after seeing the decline that had taken place in Jacoby after six months. After seeing Jacoby for about a year they were referred to a team of Geneticists. Upon meeting with them Jacoby was referred for several tests to be done. This would include a muscle biopsy, an MRI, and EEG, and EKG, as well as many other tests. Dixie says the list goes on and on.
Upon the completion of the testing, Jacoby would receive the diagnoses of Mitochondrial Myopathy. Dixie asked what the prognosis was for this disease and she was told that it leaves no survivors. She went home and Googled the disease and she said that her heart was shattered by what she had read. Just like in many cases, the proper diagnoses is not reached initially and that was the case with Jacoby. He was given yet more referrals. This time one was to a Ophthalmologist and one to a Cardiologist because the disease effects the muscles.
After about a year Dixie voiced her concerns to Doctor Lee because she didn't believe that Jacoby had Mito. The doctor referred them to another Geneticist who ordered a test named whole-exome sequencing. Upon completion of this testing Jacoby was given the diagnoses of neuronal ceroid lipofuscinosis. Batten Disease. “I couldn't believe that Jacoby had this disease because he had never had seizures and his vision was fine.” Two months after the diagnosis Jacoby had his first seizure.
“I was so afraid and thought that he would die shortly thereafter but Jacoby continues to battle this dreaded disease daily. He still has his vision and I fight daily to keep his life as normal as possible. No one could possibly understand the feeling of walking down the hall every morning praying that you'll find your child still breathing.”
If you look at Jacoby's Facebook page you will take note of the fact that Dixie does her very best at keeping Jacoby's life as normal as she possibly can. When Dixie says that no one can possibly understand the feelings that she has, she is correct. No one can know those feelings, except someone like Marlo. Marlo can!
Marlo stated that what led to concern about Dante' was his falling. She said that Dante' didn't take his first steps until he was 18 months old. According to her, he went through a period of mastering walking but then he regressed. He kept falling. Just like in Jacoby's case, his speech was effected. He would make progress but then regress in this area as well. Marlo puts it like this, “He went from sounding like he was speaking a foreign language to speaking well and learning to speak Spanish to regression and stuttering.”
As was the case with Dixie, the journey to find a diagnoses for her son Dante' was long and difficult. Who would believe it possible that it would take ten years to find out what was happening to her son? That was in fact the case. “Our journey to diagnosis was a 10 year journey. It led us to many cities, near and far... many hospitals and doctors.”
I have to tell you that I have the deepest amount of respect for each one of these ladies. I have learned enough from chats with them and others to know that both of them are willing and able to do anything possible for their sons. They both fought to find a diagnoses and continue to do their very best for each son's specific needs. Marlo is not someone that you would want to take lightly. She is college educated, having degrees in English Literature and English Education. She works out. I mean, you know, with weights. Concerning dealing with doctors she had this to say:
“I found that there were some doctors who cared and others I, literally, wanted to throat punch!!! They ranged from loving and caring to not giving 2 beans about my child or anyone else it seemed. Many had a God complex. They would say, "I'll see you next year for your follow-up"... I replied as matter-of-factly as I could with, "No, you won't". They weren't even trying to find out what was wrong with my son.”
It seemed that the road was not easy for either one of these ladies in finding out what was going on with their sons. In fact, this is often the case for any parent that seeks a diagnoses for what turns out to be a rare disease like Batten.
Marlo told me by statement how absolutely devastated she was when informed about the diagnoses of Batten Disease. Called by the doctor herself and not her assistant, Marlo was led to believe that the news was serious. In fact it was. She was alone and at home when the phone rang. Her world was changed forever. She was informed that the diagnoses brought with it the fact that there is no cure and that her son was terminal.
“I can't remember calling my mother, but, evidently, I did... I had passed out on my bedroom floor as I was overtaken with grief. My mother had driven 30 minutes to my house and let herself in with her key to get me off the floor and into bed.” “I wasn't expecting the words terminal or no cure to be a part of the equation as I felt there had to be some kind of pill to fix it... I was like, "What do you mean there's no cure??? We live in the United States of America... Of course there's a cure!!!”
I still remember Marlo telling me in an earlier chat that life as a single mother of a child with Batten Disease can be a lonely existence. I can see where that would be the case. When your child is dependent on you in the way these kids are, you are very much restricted to the house except for appointments or when someone can give you some relief. As a matter of fact both of these ladies were required to leave their careers in order to care for their sons. It is not my place to know where their support comes from but I do know that they are required to live on a very restrictive budget. They do so because they have no choice, but also out of the love that they have for their sons, Dante' and Jacoby. I am so glad that they have the support of each other on a daily basis, as well as the support of the rest of the Batten Disease community.
According to Marlo, “Life before diagnosis was pretty amazing. We were able to travel and live without counting every penny or dragging massive amounts of medical equipment and medicines with us. Sure, I had my struggles, but in retro, it was a good life.”
Jacoby has a younger sister named Myracle. That means that the family budget has to provide for four people. In Dixie's case, she lost her job four years ago due to having to take Jacoby to physical and occupational therapy doctors appointments so frequently. She stated that had she known what lay ahead, she would have taken their current struggles into consideration. She would have been better prepared. It is so hard to predict the future though. She goes on to say that it takes a toll on the family in many ways. (mentally, emotionally, physically, and financially). “Some days I don't know how I will go on but I simply look at these beautiful smiles and I know that there's always a rainbow after the storm.” And beautiful they are! There is nothing that Dixie wouldn't do for her children and it is easy to see why!
The situation with Jacoby's little sister Myracle, now eight years old, brings up another subject all together. How do the demands of this disease and the impact of it effect a Batten child's siblings? As with any special needs child, they require extra time and attention. That time needs to come from somewhere. Unfortunately it often times comes from one or more of the other kids in the family. Dixie's feeling is that Myracle is required to give up much of what would be a normal childhood because of Jacoby's health issues. As an example, Myracle enjoys all kinds of outdoor activities, such as water parks. However, as Dixie put it “...it's just not physically feasible for me to be able to get him (Jacoby) up and down water slides.” Dixie stated that at one point, she had to have Myracle in therapy to help her deal with the situation. You know what though?
As I was making a remark to Dixie about how beautiful her daughter was. She said thank you and then made a comment that was telling. She said that Myracle is very compassionate towards her older brother and his plight. She went on to say that Myracle often asks about the other children in the Batten community to see how they are doing. You know what? Myracle gets it! She has a really bright future ahead of her. I am sure.
How well do these two Batten Mother's and close friends deal with stresses associated with their situations on a regular basis? In Marlo's case, she has had to adjust in a big way. I am so glad that they both have access to such a caring community and organizations that are able to help them get through it all. I'll let Marlo tell you what it meant to her to meet the people from BDSRA and the difference it has made.
Marlo puts it like this, “Initially, my feelings were all over the place and I was certain I would end up in the looney bin... Then, I met the most amazing group of people, (BDSRA) The Batten Disease Support and Research Association. I met the Director during a chance meeting during Rare Disease Week on Capitol Hill. I had seen there was an event for people like us in Washington, DC, and because I was all over the place with emotion, I asked my daughter to drive us there. We threw our things together in a matter of minutes, with no hotel arrangements whatsoever and headed to DC. This was the first time since diagnosis that I realized I was not alone. It was an amazing feeling to stand in a room full of people who were just like me. At that moment, I decided to be just like them and I moved from tears to advocacy. I'm not saying that I don't have my moments, but I know better now how to dust myself off and come up swinging.”
And indeed she is active, as able, in advocacy work for finding a cure for Batten Disease. She meets with politicians and does everything that she can to get legislation started. She wants to make sure that, in the future, parents won't have to go through what she has. She is in a prime location geographically to make a difference.
I think that the importance of the close knit families in this community and what they mean to each other can't be overstated. Dixie told me what a tremendous impact that the people in the Batten community are having in her life. She said, “I don't have a very large family. So therefore I take comfort in knowing there are others that know exactly what I'm going through. I Look to them for answers to questions and we lean on each other since this disease is so rare. There's not very much that doctors know about it especially in my area. Jacoby is the only known diagnosed case of Batten Disease in Mississippi as of right now.”
Marlo and Dixie are both involved in fundraising for each of their young warriors. It is not something they particularly enjoy doing but it is essential to getting the help that they need. The Chili's restaurant in Dixie's town has done a fund-raiser for Jacoby twice. Dixie has also raised funds through the sale of Jacoby's Journey t-shirts. When it comes to depending on others, Marlo had to adjust. She tells it this way, “I have had to learn to lean on others more than I care to do. I don't like the idea of fundraising, but without it, we won't be able to do those things that are necessary to move forward... that was a big issue for me, as I am a very independent individual.”
Dixie tries to maintain a positive attitude, especially when posting on Jacoby's Facebook page. She wants people to remember Jacoby for the positive and especially for his great big smile. Dixie feels like her life, right now, is one that she would not wish on anyone. She states that “the unknown of what is to come next is sometimes worse than the reality of the disease. Not knowing what the next day will bring and what different changes will come about in your life.” Dixie, I know that you feel like you are all by yourself at times, however, I want you to know that you are never alone.
As for Marlo, she states it like this: “Life after diagnosis has not been a crystal stair, I have had some good days, some bad days and some hills to climb, but through it all, I know God is in control and He is an awesome healer.”
She goes on to say, “Life after diagnosis has not been all peaches and cream, but I have learned to "find the silver lining" in every situation... good, bad or indifferent, we have this one life to live and as long as we are breathing out and breathing in, it's a good day and I am going to try to live my best life with the cards I've been dealt.”
It doesn't matter which of the families that I have written about. I always have these moments when my emotions are stirred up while I am putting their stories to print. I know that a lot of people that read what I have written only see sadness and heartache. It's true that there is plenty of that. Just ask the families themselves. There is often times financial hardship as well. The disease doesn't discriminate. I however, can't get over the fact that all of these families create love stories through their sacrifices. As my friend Shannon stated recently, all that can be done is to show kids with an incurable disease our undying love. There is one other thing that can be done. That is to work towards spreading awareness and funding research towards a cure. We can also help those that are in the middle of the battle by any means that we can. As I have said several times, I am on the outside looking in when it comes to the Batten Disease community. I can tell you what I see as I do look in. I see total selflessness and sacrifice on the part of these parents. I see the undying love that Shannon mentioned. I see strength and I see determination for doing the absolute best for a child that deserves better. I also, however, see the heartache.
This is Dixie's and Marlo's story. Dixie and Marlo, you are both warrior moms and exceptional people. Yes, I know that it has to be a lonely existence at times. That is why I am so glad that you ladies have each other. I am also glad that you have the support of such a loving community. I wish that I could do more to help but I am always here to listen. Thank you so much for letting me tell your story!
There are two very fine organizations that are involved in the fight against Batten Disease. One is at work in the United Kingdom and the other is working here in the United States. I am including the links to both in case a person reading my blog wants to give to this most important cause.
In the UK :
In the U.S.
“I am just an ordinary nana that had a very special bond and relationship with Marshall from the day I watched him being born.”
I agree with this statement in part, however, I would take exception to one small part of it. I'll explain as we go along.
As I continue to write, I find myself becoming immersed in the stories that are created through the trials and circumstances of others. I am by nature an emotional and passionate kind of person. I actually work in the aviation field as a mechanic. I work in the overhaul shop at a Heavy-lift helicopter company. A lot of the material that I put into print comes to me as I am performing some of the more mundane portions of my job. Sometimes, I will be working and thinking over the details of people's stories and I will find myself becoming weepy eyed over the details of their struggles. I quickly collect myself and press on.
Are these stories about rare children and their families all sounding the same to you? Well they shouldn't. Often times the outcome is the same. That is true. Some families are in the middle of the fight. Others have been through a battle in which they have lost the most precious of possessions once held in their arms. Each story is unique because each family has their own story to tell, as well as, their own set of circumstances. These stories are filled with hardship and difficulties. However, they also tell us about a demonstration of undying, sacrificial love. They often times show us the nature of the indomitable human spirit. These stories are to me a mixture of heartache and treasured memories, vulnerability and great strength.
You, the families of rare children, by your example are writing these stories. I am just putting them into print.
As I write this article my number three son has his 27th birthday quickly approaching. My special needs son is a special guy. He brings so much laughter into this house. He also brings challenges along with the joy that we experience by having him. He depends on us to help him in the ways that he is not able to help himself. As a result of that, there is a special bond that has developed between him and my wife and I. What if a child is totally dependent on you for survival? What is the bond like? Is there anything that you wouldn't do for that child? What would you not give up in order to fulfill obligations of that bond?
This next story takes place in the city of Plymouth in the United Kingdom. According to Wikipedia, Plymouth is the place that the Pilgrim Fathers departed from in the year 1620 in their Ocean Journey to the “New World”. Throughout the Industrial Revolution Plymouth grew as a commercial shipping port. It would become an important naval port during World War II. That would make it a target for attacks that led to it's partial destruction. The city center would be completely rebuilt and that would bring Plymouth to be what appears to be a most beautiful coastal city. It was estimated in mid 2015 that Plymouth was home to about 262,700 people.
Plymouth is not only a beautiful place. It is also the place of a most beautiful story.
Marshall Dylan Michael Clark was born November the 8th, in the year 2008 at Derriford hospital in Plymouth. His mother Lara had so looked forward to Marshall's appearance into this world, just as any expectant mother would have. Lara would give birth to Marshall without her newborn baby's father being by her side. You see, Marshall's dad was a warrior. He had been called away to serve his country in the War on Terror. That was in the prior month of September.
Lara, however, would not give birth to her son while being alone. Lara moved in with her mum and dad when she was six months pregnant and her mum was by Lara's side when her son was delivered. Elsie Clark was no ordinary mother. She was by vocation a highly qualified nurse and that would prove to be instrumental in the life of baby Marshall. Elsie was the first person to hold Marshall in her arms after his birth and the bond was instantaneous and real. Lara stated that the both of them fell in love with Marshall from the minute that they first laid eyes on him. Who could argue that would be the case after looking at his picture.
I am certain that as little Marshall began to grow he filled the house with much Joy and happiness. As a matter of fact Lara stated to me that, just as you would expect, Marshall was a happy little guy. We all as parents, carry with us fond memories of these times in our child's development. Everything that we observe at this early age is just so precious. All their little actions put a smile on all but the most cynical of person's faces. At two years of age, the family noticed that Marshall was struggling in the area of his speech, as well as, other areas of his development. Three months after his third birthday he had his first seizure. Seizures! Every story that I have followed about a child with Late Infantile Batten Disease includes seizures at an early age. This is usually what prompts a parent to seek medical attention and to start their search for answers.
When it comes to stories about children with Late Infantile Batten Disease, you won't see a lot of details about a child's early years. That is because as the saying goes, “First it takes the childhood, then it takes the child.”
Lara, her mum Elsie, and the entire family must have been heart broken as they received Marshall's diagnoses of Late Infantile Batten Disease, CLN2.
Elsie would bring Marshall to most of his doctor appointments as Lara was working a lot of hours. That suited everybody well because of the bond that Elsie shared with Marshall. You see, as I have been told by both Lara and Elsie, Elsie loved Marshall not as a grandmother. Elsie loved Marshall as a mother would. Lara stated it like this: “Marshall and mum had a bond that is beyond anything I ever saw.” If you look at the pictures of Elsie and Marshall together it is a beautiful thing to see and it is quite evident that the bond was of a special quality. This is the type of thing that, as I mentioned earlier, stirs up my emotions.
As the saying goes, you learn something new every day! I didn't know what the term Palliative Care meant until doing this article. You see, this was Elsie's area of expertise. She would state it to me in this way: “I was fortunate that the only skill I have is that of being very experienced in medical matters particularly in palliative care and the control of symptoms such as those that Marshall was presented with.” And that actually defines the term. This type of care is focused on providing relief of the symptoms and the stress of a serious disease like Batten Disease. It is my opinion, but as Elsie held Marshall in her arms at the time of his birth there was already a plan in place for the care and attention that Marshall would need. That plan would be carried out through Elsie.
It was very fortunate for Marshall because Elsie had to fight for the appropriate care on many occasions. She stated that It was so wearing but fruitful because Marshall's seizures and abnormal movements were well controlled as a result . Wearing? Yes. But worth it for sure. Elsie would tell me “That was the least I could do for the child that was my world.”
She said that “Plymouth has no community palliative care, no local hospice care and the palliative pediatric community team only worked Monday to Friday 9 to 5. They were also very inexperienced in palliative care and symptom control so the responsibility of making sure Marshall received the correct, best and appropriate treatment fell to me.”
It was an extremely tiring, lonely time for Elsie. She stated to me that the only thing that kept her going was the strength of love that she had for Marshall. I see this as a common theme when it comes to caring for these children. Like I have said already it is a combination of heartbreak and steadfast, undying love for these kids. It moves people past their own fatigue and it gives family members the strength to move ahead each day.
“My knowledge prevented Marshall from so much unnecessary suffering but it is a frightening thought of what would have happened had I not had that knowledge.”
In fact I have read where parents that are facing this situation actually have more knowledge about the disease. They know better how to treat the symptoms than medical professionals. What is it like for the parent of a rare child when they are faced with a medical staff that lacks the specific knowledge needed? How stressful is it when they have to fight to get the care that their child needs?
Elsie said that other care providers would have probably just have accepted that the situation could not have been prevented. The whole thing caused her much frustration on many occasions. She was, however, surprised by her own ability to stay firm, using facts as weapons to fight for Marshall.
“I sought information from experts all over the world, sending videos of Marshall to ensure I was aware of the correct medication and approach to each different abnormal movement . I fought for him to have medication via a syringe driver which he did for 10 months which controlled seizures in a way other Batten sufferers never receive.” This statement makes me wonder if this technique is now being used by others. If not, then maybe it should be!
Elsie never left Marshall's side night or day when he had to be admitted over the last three years of his life. She never left the house the last ten months of his time on this planet because she felt that no one else could care for him as she could. You know what? That is total and complete devotion. Elsie left her position as a nurse to care for Marshall full time. At a certain point Lara decided that it was in the best interest of Marshall to give custody of him to her mum, Elsie. She puts it like this,
“I decided to send Marshall to live with my mum because she lived and breathed Marshall and I was by myself and quite honestly couldn't manage. My mum understood Marshall on a different level not just a medical one but an instinctive level. They loved each other most in the world.”
Oh my goodness! Once you combine statements like this to the photograph's of Elsie with Marshall, It presents a complete picture. These two shared a bond that was uncommon. It is one that may only exist in rare families such as these. In this case though, I think we are talking about something that is one of a kind. In fact I know that we are.
“It was just a fact that outside of HDU the experience necessary was not available. Marshall also became distressed if I left his side for even the shortest of moments. It was an exhausting time but I would have remained by his side for the rest of my life had I needed to.”
Marshall would experience the same set of circumstances that any child facing Infantile Batten Disease would. Trying to keep his oxygen levels where they need to be. Controlling seizures and keeping his lungs clear. There is no doubt that Elsie's constant attention and loving care of Marshall made all the difference. She minimized the effects of the disease on Marshall in the best possible way that she could. Marshall loved his Nana because of the bond they shared with one another. It started to grow from the very first time that she held him in her arms and it was unique. Like none other. It was only strengthened by the total devotion that she showed him. It is very uncommon for a grandmother to empty herself out for a grandchild in the way that Elsie did for Marshall. She walked away from her career in order to give him her undivided attention. Elsie stood by Marshall's side covering him in love and affection while assuring him that she would never leave his side. In the end Marshall would leave us to go be with his little warrior friends.
My son Benjamin is mostly non-verbal although he uses single words and sometimes surprises us with small phrases. I often times speak for him when I post his pictures on Facebook. I enjoy being his voice on social media and most of the time it is just for fun. Elsie would speak for Marshall in her Facebook posts as he was unable to do so for himself. When she did, it was on a much deeper level. You sense that Elsie felt what Marshall was feeling because of the deep connection that they felt towards one another. I bet that, yes it is possible, that Elsie could look into Marshall's eyes and know what he was thinking. She could feel what he was feeling. There were quite a few meaningful posts that Elsie did on Marshall's behalf. When I had received the okay from her to do this article there was one in particular that came to mind. I did a search and was so pleased that I was able to locate it. She did this post right at the end of Marshall's life:
“This will be my last message on here because by the time you read this I will be in Heaven. It's okay because nana has told me all about it and about all the wonderful things I will be able to do when I am there. There will be loads of slides and strawberries and cupcakes and I will be able to eat again and run and watch videos. I was worried that I would miss the people I love so much and that would make me sad but nana told me that the love people have for me is so strong it will be like they are there with me. Nana says I have been the bravest boy ever. When Batten disease stopped me from being able to use my iPad or feed myself or play games I still kept smiling. I never cried when I kept falling down all the time or when I stopped being able to eat food and had to have it put in a tube in my tummy. Nana says I just accepted everything that happened to me and kept laughing for as long as I was able to. And when I was no longer able move or talk or see. I loved listening to nana read out all the messages my friends wrote to me. You have been with me and supported me and loved me and I want to thank you from the bottom of my heart. But now I have to say goodbye. Be happy for me that I am no longer trapped in a body that stopped me from enjoying my childhood. I am now free to do all the things I have missed so very much. Lots and lots of love to you all, your Marshall xxxx”
The day that Marshall left for heaven, Elsie posted a picture of him laying in a bed. He had gained his wings. While the picture may have seemed ghoulish or just difficult to look at, the message did not escape me. As Marshall lay there he looked so peaceful. Resting in comfort. Gone from his surroundings were the pieces of medical equipment that were needed at any given time to help him survive the day. The sight of his beautiful face was no longer obscured by an oxygen mask. He was just laying there in his Batman pajamas, ever so peacefully. Marshal was now completely free from the disease that had him bound. Marshall was, and still is, Elsie Clark's world.
I am not one to force my views on people. However, I have to say that I believe each one of these children lives on in an eternal home. I believe that they are experiencing things that the human mind cannot completely comprehend. Things unimaginable to us here on earth.
This is not to say that this is all okay. It is not okay for a family to go through this and that is why we advocate for a cure to Batten Disease and all other rare and fatal childhood diseases. Progress is being made but it is far too slow in coming.
I have to say how much I respect Marshall's mum Lara for making the decision to turn over Marshall's care to Elsie. Even when it meant being separated from him. I am sure that it wasn't an easy decision but it was definitely the right one. The focus here has been on the relationship between Elsie and Marshall, however, it is so apparent to me that Lara just adored her little man. It was out of her love for Marshall that she made the decision to get him the best care possible. That care was through her own mother Elsie. I know that Lara's heart just aches over the absence of her son. When Marshall was five years old, Lara gave birth to Marshall's new little brother Troy. I can see that Lara is an excellent mum to little Troy. He is a little doll man just like his big brother Marshall. I can see that an attractive appearance runs in the family. Lara, I know that you have a bright future in front of you and I wish you the absolute best!
Elsie has pressed on as best she is able: “I have now returned to work and act normal and keep my feelings well hidden. Away from work I spend as much time as I can alone with my memories. It is exhausting being 'normal' but I am not someone that wears my feelings on my sleeve. Grief to me is like chronic pain. It's never going to go away, people don't want to hear about it all the time so you accept it will always be with you and find your own strategies for coping with it. Some days are better than others but it's always there.”
What about the people that are recipients of Elsie's care now that she has been through this experience? I don't mean to be overly dramatic but can they possibly understand? The people who have Elsie in their presence or who are under her care have no idea what makes her who she is.
“It's been 10 months since I stopped working so I could spend every precious moment with you. But tomorrow I will put my uniform on again. Loving you and nursing you has taught me so much and in your memory I promise others will benefit from my life with you. I take strength from knowing you will always be with me, my darling”
I followed Elsie and Marshall on Facebook as Marshall battled so bravely. I have noticed that families which are facing this same battle can handle things differently when it comes to social media. Some go about things somewhat privately and others do things on a larger scale to bring about greater awareness. Elsie was so busy caring for Marshall and she shared hers and Marshall's journey on a smaller scale. I paid attention. Her devotion to Marshall is a beautiful thing to behold. It was No Ordinary Love story and Elsie Clark, you are no ordinary Nana!
You rare families write these stories. I am just putting them into print. Thank you Lara and Elsie for allowing me to do so. Much respect and appreciation!
No Ordinary Love
There are two very fine organizations that are involved in the fight against Batten Disease. One is at work in the United Kingdom and the other is working here in the United States. I am including the links to both in case a person reading my blog wants to give to this most important cause.
In the UK :
In the U.S.
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