My name is Tina and I’m an EB Mom. I’ve been an EB Mom for 17 years now. I don’t think I remember my life before that. My adult life has been all about EB. I live it, and breathe it. There is no support group or treatment course that can change the reality of my life. Talking about it helps, but EB will not get better or go away. You don’t recover from the scars that it pervades on your heart and soul.
I am one amongst probably millions of people who carry this dreadful gene. According to some research, the average person has around 400 defects in his or her genes, including at least a couple that are associated with this disease. Genetics is probably one of the most complicated sciences out there. Understanding it is even harder. I won’t bore you with a lesson in genetics, but I will try to explain how carrying this EB gene has completely changed my life. I do not have the disease, but I am responsible for passing the gene along to both of my children. My daughter is a carrier like I am, and has the potential of passing it on to her children when she has them. My son not only inherited my “bad’’ gene, but also has a gene that mutated in his DNA causing him to have EB. As long as a person has a good gene and a bad gene, the good gene will always prevail. Usually, both parents are carriers of the gene in cases of Recessive EB. That is not the case with Jonathan. For most of his life, we were told that both his parents carried the EB gene. It made sense to us with our limited genetic understanding. It’s only in the recent year that genetic testing confirmed that he inherited my gene; but the second “bad’’ gene was not passed on by his father, but rather the result of DNA mutation at the moment of conception. So, if my calculations are right… Jonathan has blue eyes and red hair, which together form the rarest eye and hair colour combination on earth. EB in all its forms is considered a rare disease… that makes Jonathan as rare as a unicorn!
I was 20 years old when my son Jonathan was born. I had it all figured out, or at least I thought I did... This pregnancy was completely un-planned, but I embraced the new little life that was just beginning. Jonathan was born on June 2, 2000. I was overjoyed with excitement and completely unprepared for what this new journey had in store for me. I tried my hardest to get ready for parenthood the whole time I was pregnant; but nothing really got me ready for what was coming. I was induced at 38 weeks because I had pregnancy-induced hypertension (PIH). PIH can prevent the placenta from getting enough blood. If the placenta doesn’t get enough blood then your baby gets less oxygen and food. At 38 weeks, Jonathan was fully developed and it was much safer to welcome him into the world and avoid complications that could arise from having PIH. I was in labor for 15 hours. Jonathan wanted nothing to do with coming out. The minute I would stop pushing he would go back in the canal. After pushing for two hours and not being very successful, my obstetrician debated between using the vacuum extractor and doing an episiotomy to get him out. For whatever reason, she opted to go with the episiotomy. Good thing she did, knowing Jonathan’s diagnosis now and the impact the extractor would have had on his skin. I would have hated to see the damage it would have done to him. Jonathan was born at 23:03. Aside from a few scratches on the top of his head that the doctors thought was a result from my long labor; he was perfect!
The paediatrician came by the following morning to examine my son. Shortly after, the doctor returned to my room with a concerned look on his face. He explained that Jonathan had small blisters on his fingers and wasn't sure why. He wanted to transfer him to the children's hospital to better assess him. What was happening to my baby? He was fine before the doctor came to see him. I examined him from head to toe and counted all of his fingers and toes, he was perfect! It’s like someone had ripped my heart out - I couldn’t breathe anymore.
When the medical transport team arrived, I wanted my discharge from the hospital. No way was I going to stay there if my baby was being transferred to another hospital. I would lose my mind if they made me share a room with another mom and her new baby when I had no idea what was going on with my precious angel. I was standing around looking at the medical team prepping Jonathan for the drive. They had started an IV on his little arm and as they were ready to go, one of the nurses tripped on the IV line. There are no words to describe the horrified look on our faces as we saw the tape that was securing the IV in place come off, bringing with it a significant piece of Jonathan’s skin. We knew at that point that something was not right.
Jonathan's ride to the children's hospital was rough. Jonathan stopped breathing and needed to be intubated as soon as they arrived at the hospital. After many attempts, one of the fellows managed to intubate him. We later found out that the suction machine that the doctor used at birth, the same procedure that is commonly used to clean out the newborn's airway to help him breathe, had completely blistered his airway making it impossible for him to breathe. Jonathan was given steroids to help reduce the inflammation and the swelling. After two days of being hooked up to a breathing machine we could hear a crackling noise coming from the machine indicating that some of the swelling/blistering had decreased. Good thing because Jonathan decided he had enough and pulled the breathing tube out shortly after. Once again, the tape that was securing the tube inside his mouth had ripped the skin from his face when it was removed. We realized that whatever was happening, Jonathan’s skin could not be in contact with any kind of adhesive because his skin would just come off upon its removal.
Jonathan was kept in an incubator in the Neonatal Intensive Care Unit (NICU) for over a month. We had no idea and had no diagnosis on his condition. Nobody had answers. Days and weeks passed but I remember it feeling like a lifetime...Jonathan just lying in his little house, his incubator. I felt so helpless and completely disconnected from the world. The only thing I wanted was to hold my baby in my arms and take him home. The cruel reality was much different, I wasn’t allowed to hold him in my arms and I had to wear decontamination gowns and gloves to stick my hands through the sides of the incubator to touch him. It killed me inside. Father’s Day, that year, was the happiest day of my life, they had finally transferred Jonathan from the incubator to a crib. I’ll always remember my heart skipping a beat looking at his incubator and not seeing him there only to walk closer to see him sleeping soundly in the crib right beside. My life as a Mom felt normal for the first time.
The NICU is not a unit that you want to make your home, you want to make it a short visit and go home. Not that the medical staff aren’t nice or completely competent, it’s just a scary unit to be on. You never know if you will be discharged and go home as a new family or go home empty handed and broken-hearted. I remember looking at the other families on the unit come and go and wondering if I would ever get my turn. I try not to think of our time there too much. At least I got to bring Jonathan home. The hurt, however, has been permanently engraved on my heart. Don’t get me wrong, I have lots of happiness in there as well. I see my heart as a large toolbox with many compartments to store every moment good or bad. You can close the drawer but you can just as easily reopen it.
The tests were endless, and Jonathan’s skin would break down more and more. Even something as simple as removing the band-aid that was applied after his spinal tap pulled his skin right off from his lower back all the way up. Every new test or blood work would cause even more blisters on his little hands. The blisters would grow at the slightest touch. Nobody wanted to puncture them by fear it would make it worse. Eventually the blisters broke from Jonathan moving around, leaving his little hands completely raw and what resembled a lot like third-degree burns.
Feeding time brought a whole new spectrum of challenges. Jonathan's mouth would blister at the slightest sucking. Breastfeeding was out of the question and so was bottle-feeding. The only way around it was using a syringe to feed Jonathan with the hopes it would limit the friction in his mouth. He would cry nonstop because sucking is an instinctual behaviour in babies and the syringe wasn’t fulfilling this need. I remember going to the drugstore pharmacy and standing in front of all of the nipples for bottles and trying to figure out if there would be one soft enough for Jonathan to use. I ended up buying all of the silicone nipples, going home and cutting the tips in a star shape with a pair of scissors to make an easier flow. Jonathan got the hang of it right away. He really didn’t have to suck on it at all, the minute you’d turn the bottle over, the milk would start dripping but it gave him what he needed to content that need with minimal skin breakdown in his mouth.
Days turned into weeks, and weeks turned into a month before I got any answers. The medical professionals were trying their best while being faced with something they had never seen before in their careers. So many questions were asked. Different specialists must have interrogated me every day, everyone trying to figure out what was happening to my son. They would question my lifestyle, if I had experimented with drugs, and my previous sexual experiences like this would reveal the origins of this mysterious disease. I remember standing there feeling so guilty like I was to blame for giving my baby this illness.
After many tests and skin biopsies that were sent to the U.S for testing, as this was not done in Canada at the time, Jonathan was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). I had never heard of such a condition and to add salt to injury, the doctors had very little knowledge to share with me. I was given literature that was printed from a book to read and told that Jonathan had a mild case of EB. Thinking back, with the knowledge I have today; I would have hated to see a bad case of it. I started my own research online in the hopes that I would find something or anything stating that EB got better with time. This couldn’t be happening; the doctors had to be wrong. Every search I made got me more and more scared of what my family was facing and the suffering my son was going to endure all of his life; that is if he even survived the first couple of years of his life. I found very little use in the information I read and figured that no one or anything could help me figure this out. I was on my own! If being a new mom wasn’t challenging enough, a curve ball had been thrown into the mix – I had to learn how to care for a child with a serious skin condition. Tina against EB - Round 1!
EB became the focus of our lives. Jonathan was finally discharged from the NICU in July. I was so happy to bring him home. Being home was nice, but I had become so accustomed to Jonathan being hooked on heart monitors, that I would not sleep and instead check on him a hundred times a night. The minute I wouldn’t hear his breathing I would rush to his bedside to check up on him. What made the transition that much harder was that the nurses would have him sleep on his belly in the hospital. It was safe and he was constantly being monitored. It just didn’t convert well once we were discharged. Once home, we were strongly encouraged to have Jonathan sleep on his back to reduce the risks of SIDS. Well good luck with that! Sleeping was probably the only time Jonathan had any kind of comfort from the pain he was enduring day in and day out. I had to try to recondition him after he got used to snuggling on his belly since birth, along with trying to learn how to be a parent outside of the hospital. Pain control was also an issue. In the hospital, Jonathan’s pain was controlled with Morphine. Upon discharge the only prescription I got was for Tylenol or Tempra. How does this compare or compensate? It’s not like he was cured all of a sudden.
How quickly I became an adept advocate for my son. Not leaving his bedside to elude the risks of having tape applied on his skin or manhandled, not intentionally trying to hurt him but EB skin needs to be handled using the gentlest approach. I became the mama bear protecting her cub and did the only thing I knew how to do… control and do everything myself. That way I couldn’t get frustrated or angry with people. I was the only one touching him. I had full responsibility of his skin. I couldn’t fault anyone for the appearance of new blisters or broken skin. I was it! I can recall the first time I injured Jonathan’s skin. It was a complete accident; it would have done nothing at all if his skin weren’t so fragile. I was changing his diaper, we had opted for cloth diapers because the plastic ones would just damage his skin. My thumb slipped on his belly and the skin sheared right off. It completely shattered me! It took me a very long time to not feel guilty every single time I hurt Jonathan. To this day I still feel bad when it happens, but the fragility of his skin is beyond anyone’s gentleness. He would have to live in a bubble to not get any trauma to his skin. Even then, it would probably figure out a way! I’ve had to learn to forgive myself of the guilt that I’ve felt for passing along a gene that causes such a horrendous condition. Seeing your child suffer every day from the constant pain that he lives with day and night is probably the hardest thing my mommy heart has had to absorb. Not being able to relieve him or take away the pain for even a minute has challenged me as a person and has had me question everything I have ever believed in. I’ve learned that looking back not only holds you back but makes you lose complete focus of what is really important in life: love and happiness!
Given that EB is a rare condition, knowledge was not readily available at the time, so learning how to care for an EB child came with its challenges, trials and errors. I quickly became an expert at changing dressings and popping blisters. Unlike normal skin blisters that we get from wearing new shoes, Jonathan’s blisters, if they are not punctured and drained properly, will keep growing in size. People with RDEB are missing the anchoring fibrils that hold the skin layers together, the skin layers keep separating and the fluid increases making the blister grow and grow. The only way to stop this from happening is by puncturing and draining the blister completely. This goes against everything that is recommended for regular blisters on people that don’t have EB. Everyone knows that we don’t puncture a blister unless it is large, painful or likely to be further irritated. The new skin forms underneath the blister and the fluid is simply absorbed. The fluid-filled blister keeps the underlying skin clean, which prevents infection and promote healing. Well I’m pretty sure you‘ve concluded, if you’ve read up to now, that there is nothing typical, common or ‘’normal’’ about EB.
Every new step brought a new challenge. Graduating from milk to solid food was very scary. Because Jonathan has Dystrophic EB, this means his wounds and blisters leave scars after healing. As a result, the opening of his mouth got very small, his tongue lost mobility and his oesophagus started narrowing. Very often kids with EB require oesophageal dilatation, a risky procedure wherein a balloon is used to widen the oesophagus. It is also very common for them to have feeding tubes because of their inability to swallow safely and their need for nutritional supplementation. Jonathan has lived most of his life eating the things he can, pasta is still his favourite to this day. The times where his throat gives him grief, I switch his diet to softer food like yogurt and Ensure to make sure he gets adequate nutrition. Kids with EB need much more calories than the average person. Much of their nutrition goes to healing their skin and trying to substitute the nutrition they lose through their skin's constant weeping. It is also proven that their absorption of nutrition may not be sufficient because of the breakdown in their gastrointestinal tract.
Imagine as a parent not being able to hug your child and worrying that instead of comforting them you are hurting them. Every single touch to an EB child has to be thought out. Your every action has to be reconditioned and re-evaluated for fear of hurting them. I do hug Jonathan in my own special way and I have become very creative in finding alternatives for almost everything. Picking him up under the arms, like most parent do, was never an option. Jonathan couldn’t crawl, as it would cause his knees and hands to be completely covered in blisters or open sores. I had found an old beat up baby walker; walkers were hard to find as they were discontinued in Canada for safety reasons. I had reconditioned it like new, changing and padding the fabric. Jonathan went everywhere in it. He could go places and I didn’t have to worry about his knees and hands breaking down. I had also modified a jolly jumper so that he could enjoy bouncing around. I had to find the smallest toothbrush I could find because of his mouth being so small and use ultimate care while brushing his teeth, as the slightest brush of his gums or tongue would cause wounds.
Living with EB has been like a roller coaster ride, so many ups and downs. I welcomed my daughter Noémy, two years after Jonathan was born. Knowing that I had a one in four chances of having another child with EB was a decision that wasn’t taken lightly. Having had tests done in order to identify the EB gene in Jonathan, I was able to have an amniocentesis done while I was pregnant to give us answers and have a game plan to avoid any surprises at birth. I received my results at six and-a-half months pregnant. My daughter did not have EB. She did however inherit my gene, therefore making her a carrier like me. The test result was reassuring but to be very honest, I was never 100% sure until she was born. Only then I was able to see for certain that she had no signs of the skin condition and put my mind at ease.
Jonathan was such a proud older brother. He would help me with everything. If I changed Noémy’s diaper he would take the soiled one and put it in the garbage. I would place her bottle on the table and he would grab it and put it in his sister’s mouth to feed her. I would sit him on the kitchen table where I would give her bath and he would wet a facecloth and start washing her hair. He was such a good little helper. He just loved taking care of her. Noémy started walking when she was barely 8 months. She was so eager to follow her brother around. She couldn’t even get up by herself but she was walking. She would crawl to the table where she would find a way to get up, walk until she’d fall again. With her new found mobility, she would make her way to where her brother would be sitting and just grab him because she wanted to play with him. Babies are not very delicate and when they grab something it is not with a gentle touch. It was such a challenge, Noémy only wanted to play with her big brother but her slightest grab of him would hurt his skin. I soon learned that EB would have a huge impact on my family and not only make life difficult for Jonathan but for my daughter as well. Being the sibling of someone with a severe disability is no walk in the park. I often reflect back at my choice of having more than one child, and I can’t deny that they have both suffered more than their share through all of this. However, I wouldn’t change things even if I could. They needed each other and there’s never been a question there. I also think we are a better family because of it; we are loving, caring and very accepting of each other.
One of our biggest challenges is to never give up and always try to be positive, even when it seems to be out of reach. EB has made us stronger and closer as a family. We’ve had many obstacles to overcome and there are more ahead of us. But as a family we will be able to tackle them head-on. I’ve been very fortunate to have my family, made wonderful friends and been part of a very supportive team at work. In the last couple of years, as Jonathan’s condition got progressively worse, I’ve come to realize that we need our family and friends as pillars of support, especially in difficult times. Everyone needs companionship and a shoulder to lean on. It is important to surround us for support and comfort in both times of joy and distress.
I had lots of sleepless nights at the thought of Jonathan starting school. The daily challenges were already hard enough to overcome that I couldn’t think of adding more by sending him to school. There were so many things to keep in mind and figure out. Trying to unravel the logistics, and making sure Jonathan had everything he needed for school was not an easy task. I had knots in my stomach just thinking about it. What if I forgot something? What if something happens at school and I’m not there to help him? The doubts were inundating my head. The most important thing for every child is to feel safe… can I offer Jonathan that sense of security? Can my heart take it? Will I worry about him all the time? The only thing I knew for sure was that Jonathan was so ready intellectually and excited to start school. He was such a little sponge learning came easy for him. My ‘’job’’ was to make sure that he had everything in place to help him succeed.
I had called two schools that were in our district. The first one I called was an easy decision to make; they had no experience with medical conditions that required any kind of modifications. My second call was a pleasant surprise and I was optimistic this was the right one for Jonathan. The Vice Principal was very receptive of my son’s needs and was happy to meet with me to discuss the modifications that would need to be put in place for Jonathan to be able to attend school every day. I got to the meeting, as ready as I could be. My face nearly dropped when I walked into the conference room and saw so many faces around the table. I would have never guessed how many people, in the different areas of the school system, it would take to identify the needs and services my child would require day after day.
I was a bit overwhelmed to say the least but I quickly understood why it was necessary. I had just experienced my first meeting with the Identification, Placement, Review Committee (IPRC) without even knowing a thing about it. This meeting is intended to discuss your child’s strengths, weaknesses, needs and identify the services that will be needed for the school year. By the time we were done talking, we had formalized Jonathan’s Individualized Education Program (IEP), established his requirement for an Education Assistant (EA) to help him with everything and anything, discussed the modifications that were needed for the bathroom and the classroom, and identified a room to do dressings should there be a need for it. We were very thorough but I knew there would be more things to address once Jonathan was finally in school.
The end of August came and the first day of school got here in a hurry. To see Jon so proud getting on that big yellow bus for his first day of Senior Kindergarten was such a memorable day for my family. I know that this day makes every Mom proud and maybe a little sad to see her baby grow up, but my happiness came from Jonathan achieving his goal of attending school. With EB you learn to grasp onto every little gain, enjoy every little moment because those moments are often few and far between. For a while, we weren’t even sure if Jonathan would ever be able to attend school, so this was a big deal. This also meant that our routine would also change to accommodate this new adventure. Our new routine consisted of Jonathan and I doing his bath and dressings every morning before school started. He watched Pokémon as I redid the dressings that needed to be changed. This meant waking up a little early but it was the only way I knew how to make everything fit into a day. There are only so many hours in a day to get everything done.
Up to this point, I had worked the night shift to avoid having my kids going to daycare. Things were falling into place; I had found a new job, closer to where I lived with new evening hours. It took a lot of organizing and I had to depend on the people around me to get this rolling until I could get my kids in the after-school program. Depending on people isn’t my strong suit, but it was the only way of going about it. The great thing of working the evening shift was that I was available for most of the school day if there were any questions or concerns. I did regular visits at the school just to make sure things were going smoothly. If Jonathan needed a dressing changed or a blister popped I was there.
I had also established some strict rules with his teacher and EA in regard to his lunch box. There were no trading lunches or snacks with the other kids; Jonathan had to stick to what I had packed in his lunch. The days where his throat had blisters and made it difficult for him to eat, I would pack softer foods that I knew he could eat. It is crucial to your EB child’s safety that everyone involved in his care follows the rules to a T. The challenging thing with EB is that you never know when things will go from bad to worse.
In general, the school was very good at meeting me half way. Jonathan enjoyed going to school, learning and making friends. He felt like a “normal’’ kid! It doesn’t mean things always went smoothly. Trust me! I lived some of my most frustrating moments since Jonathan has been in school. People sometimes think that they can overrule a parent’s decision like they know what’s best for your child, evern better than you do.
At the end of that school year, Jonathan asked me to come and see him play his last ball hockey game; winner takes all. I knew deep down that I would be stressed the whole game watching him play but I knew how important it was for him. Sitting on a bench watching the game with my heart in my throat, I couldn’t stop worrying but at the same time I was taking in the only time I would probably see my son do what he has always wanted to do…play sports. I can’t lie that I was relieved once the game was over, but the happiness on Jonathan’s face was completely worth my almost heart attack.
Life happened and my kids ended up changing schools. It was disastrous from that point on. Jonathan was bullied and completely isolated from the other kids. I was lucky enough that he enjoyed going to school because he loved to learn that he didn’t let that stop him. Kids can be so mean! Contrary to most kids, Jonathan’s greatest concerns or worries have never been about wearing the right labels or being one of the cool kids but rather if he will wake up tomorrow morning. Will his body say I've had enough! Bickering with his sister or arguing over whose time it is to do the chores is also very foreign to him. He often has to rely on his little sister to assist him in the simplest of tasks like opening and closing a door. Even though it should be his role as her big brother to help her he has had to step on his pride and ask her for help.
Jonathan has faced adversity all of his life. When he was little he always wanted to play with the other kids but he had to watch from the sidelines. He knew that any bumps and bruises would be that much worse for him because of his skin being so fragile. He was so envious of them. Instead he found himself sitting at the grown-up table and maturing way beyond his time and years. It was easy being around adults, they understood his limitations without judging him and he didn't have to explain himself when he was having a hard time. School has been a challenge. He’s always the odd one out and the last one chosen for group activities. He learned over the years that people are usually simply afraid of something, or in his case, someone different. People judge him based on his physical limitations instead of getting to know him. How often has he been approached by people in his surroundings and spoken to like he was less than intelligent or like he wasn't in the room.
I became involved with the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Canada (reg. #868336751RR0001) in 2012, following the DEBRA International Congress that was held in Toronto. Jonathan and I were invited to be guest speakers on the patient/parent panel. This was the first time Jonathan had ever met other people with EB. DEBRA Canada is a voluntary, non-profit registered charity dedicated to providing support for people affected by EB and their immediate families, and to increasing Canadians’ awareness of this challenging condition. DEBRA Canada has helped him connect with others like him and has since given him a sense of belonging in the EB community. Jonathan so desperately wanted to be part of the organization. Because you have to be 18 years old to be on the board of directors, I did what any other mother would do; I signed up as a volunteer. I knew nothing about charitable work but on the other hand my years of experience at caring for an EB child and dealing with everything that came with it gave me valuable experience that served me well in my role with the Foundation. This was my chance to give back to my community, give Jonathan a chance to help others like him and maybe get in on treatments that are being worked on. Jonathan, like other butterfly children, has touched the lives of so many people with his courage and positive attitude. My children have become my sidekicks in everything related to EB and DEBRA. Through our own experiences and the loss of many friends to EB, we’ve become even more determined to help spread awareness in the hopes of one day finding a cure.
I've always been very private about my personal life; even my neighbours had no idea what was hiding under Jonathan's dressings. It was never out of shame but mostly because I was trying to avoid having the pity looks and having to explain myself. It’s only once we decided to make Jonathan’s story public in the Ottawa Citizen that people around me got a very good picture of our lives with EB and the many struggles it entails. I was wrong to think that I could do it alone… no one is a one-man show. Everyone needs a friendly ear and a helping hand every now and again.
As the saying goes it takes a village to raise children. No man, woman, or family is an island. By identifying people in your life who can be reliable sources of support and comfort, you can be reassured that there is someone to turn to when you need help and weather the storms of life. I’ve been very fortunate to have a very supportive network of family, friends and coworkers that may not always understand all aspects of my life with EB, but are there for me within a moment’s notice. Unfortunately, that kind of support is missing from the lives of many people. If we want that kind of support, the place to begin is with ourselves. Community, like charity, begins at home. You start building a good neighbourhood when you yourself decide that you will be a good neighbour.
Jonathan’s EB affects his skin, inside and out, and really hinders every aspect of his life. The one place EB has never managed to touch is his mind. He is stronger than EB and never stops fighting. I’m not saying that he doesn’t have his moments, but he never lets it linger for long and he certainly doesn’t let it keep him down. His inner strength and resilience in the face of adversity don’t go unnoticed. Jonathan has used his imagination to get him through some of the most trying times of his life like dressing changes, pain and surgeries. When he was little he would create a fantasy world where he had powers and nothing could stop him. Over the years, he has perfected the skill of mind over matter. He uses his willpower to overcome the pain and help his body heal. I often think it’s how he’s survived all of these years. Jonathan also has a pain management regime that consists of a cocktail of high doses of opioids that don’t measure up to his pain level. His pain along with the increased pain medications have impeded on every aspect of his life. His day-to-day activities have become more difficult to accomplish and the little joys of life have been harder to enjoy. His attendance at school has also suffered immensely as a result of his increased pain, making it unbearable to do full days and maintaining a regular schedule. His grade nine school semesters had three courses instead of four in order to give him a spare period to help him complete his assignments and homework. He did not attend school for his grade ten but managed to complete two credits by doing independent learning from home. Since the Blood and Marrow Transplant, Jonathan has been working on one credit but has been too sick to put the extra effort in completing it. Unlike most kids his age, his biggest priority at this time is to keep fighting and get healthier. He is such an intelligent kid that I am not at all concerned that he will catch up and graduate from high school when the time is right.
This past year has encompassed very high levels of stress in all of my life’s domains and tested every ounce of strength I have as a parent and caregiver. After all, a parent would do anything for their kids, including switching places with them in a minute if only that were possible. Instead, I give all that I can, in every other imaginable way. It's harder than anything I've ever done, and honestly, the sheer magnitude of what we've been up against has been so overwhelming that at times I wasn't sure we would make it. The emotional roller coaster that we have been on for the last 17 years, and seeing my child suffer daily without respite has been more than I can handle.
For fifteen years, we had hoped for an effective treatment that would improve Jonathan’s EB. Several procedures and surgeries were attempted in the hopes of improving his quality of life and keeping his condition from deteriorating. After all of these years of research there is still no cure for EB, daily wound care and pain management are the only sure options for someone living with EB.
All of these attempts of improving Jonathan’s health had been proven unsuccessful. As a mom, I was disheartened that there was no hope for Jonathan to get better with conventional measures. We, were faced with making the most difficult decision we’ve ever had to make; look at experimental therapies that were being worked on across the world. We opted to come to the University of Minnesota as they were working on Blood and Marrow Transplants for people suffering from EB.
You have to bear in mind many factors when you are considering going through this kind of treatment. This isn’t a simple yes or no decision and no one can make the decision for you. So many difficult variables had to be considered. Unlike many of the other treatments that we had tried in the past, that had minimal risks, the BMT had several notable and possible life-threatening ones. However, it also had the potential of changing Jonathan’s life significantly for the better and give him many more years with us.
Two transplants and one stem cell boost later, we feel optimistic that Jonathan is heading in the right direction. Jonathan’s skin is healing in ways it never has before. Big open wounds are decreasing in size other chronic wounds have completely closed up. The many ups and downs, the many sacrifices my family has had to make pales in comparison to the new hope of seeing Jonathan enjoy a long and happy life with little to no pain at all.
I wear many different hats, I’m a mother, a sister, a daughter, a hockey mom, and EB mom, a full-time employee, a president of a charity, a friend but once all of those hats are removed I am no different from any one of you. When you look at a person, any person, remember that everyone has a story. Everyone has gone through something that has changed him or her.
Jonathan, when you came into this world, you brought a love into my heart that I had never experienced before. I can't tell you how much of my heart you filled, but I can tell you how empty it would be without you. I feel like we grew up together. The person I am today is in a big part because of the person you made me. You have taught me so much about life. My most precious memories and the happiest moments of my life revolve around your smiles and laughs. I always thought that I would be a role model for you. Little did I ever imagine that one day you would be a role model for me. You taught me the meaning of love, true and unconditional love. Being your Mom has been one of the greatest gifts in my life. May you always know your worth and how incredibly precious you are to us.