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.
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “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.” That is what happened to me!
Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so.
Blogger and Advocate
HOW THIS BLOG WORKS -
Take the titles listed below and go to month and year listed in the archives below (way below).
January 2017 -
*The Story Between The Lines
February 2017 -
*My Kind Of Royalty - CLN2
March 2017 -
*The Caring Type - CLN2
*Face to face: A Fairy-tale -CLN3
April 2017 -
*No Ordinary Love - CLN2
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story -CLN2
June 2017 -
*Seth and The Healing - CLN2
July 2017 -
*Little John and The Reason - CLN2
*Sands and The Scottish Princess - CLN3
August 2017 -
*A Rare Kind of Devotion -CLN2
*The Giggle Box - CLN2
September 2017 -
*Sweet Montanna and the Status - CLN3
October 2017 -
*The Blog about my Blog
*Sebastian's Story - CLN8
November 2017 -
*Kayden And The Change In Plans - CLN3
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2
*Brock and The Priceless Memories - CLN8
*Jamesy Boy and The Treatment - CLN2
*The Priceless Princess From Beyond - CLN2
*That Kind of Love - Conner's Story - CLN2
*What I See (She is a Butterfly) - CLN1
*No Longer Alone - Kristiina's Story - CLN2
*Things We've Talked About - Oscar's Story - CLN7
*The Reason Why - Hannah's Story - CLN3
*Kayla's Perfect Princess - Breanna's Story - CLN2
*Warriors Unaware - Mia and Kaleb - CLN2
*Her Little Story - CLN1
*Someone Like Raelynn
*Forever Royal - The Final Version - CLN2
*Awfully Beautiful - The Life of Noah and Laine - CLN2
*A Lifetime of Love - Tegen's Destiny CLN1
*Forever Beautiful - Gabi's Story - CLN7
*The Miracle Baby - Amelia's Story - CLN1
*Dylan's Life - A Small Town Story - CLN2
*Princess Grace and the Challenges - CLN2
*Anything for Tessa - Her Story - CLN2
*Haley Bug's Battle - A Family Story - CLN1
*Journey Unexpected - The Rich Family - CLN2
*My Life, My Everything - Lydia Rose - CLN2
*A Love That Hurts - Shashka's Story - CLN2
*The Things Looked Forward to - Addy’s Story - CLN3
*Love Complicated - Bailey Rae's Story - CLN3
*So Many Questions - Evelyn's Story - CLN2
*The Feelings They Produce - Violet's Story - CLN2
*Because of Love - Frankie's Story - CLN2
*The Need to Breathe - Scarlett's Story - CLN2
*The Beautiful Light of Haidyn Grace - MPS3
*Any Distance Traveled - Reagan's Story - MPS3
*The Missing Someone - Kiernan's Story - MPS3
*The Transformation - Victoria's Story - MPS3
*Not by Accident - The Charlie Grace Story - MPS1
*The Difference They Make - Harvy's Story - MPS6
*Love Profound - Veda Rae's Story - MPS3
Highlights from the beginning. When the blog was named 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