About Matt's Journey with MS
Hi, my name is Krystal. I want to introduce you to my husband Matt and our family, share our story, and why we need your help raising money.
About Matt and our family
Matt and I will have been married for six years come January, and we currently live in Michigan with our two boys. Connor is four years old, and he has the sweetest and pure heart. While our introduction to parenthood also came with figuring out how to parent a boy with developmental delays, it has taught us to be better parents and better people in the process. Our youngest son was just born in February this year. He is the happiest baby, except when he's teething or trying to poop.
Matt is an amazingly supportive husband and father, and his world revolves around us. As a family, our favorite things to do include taking day trips on the weekends to see new places, going camping, and finding new trails to hike. He is the reason I went back to school and in the middle of all this craziness will be graduating next year with a degree in marriage and family studies with an emphasis in parent and family education.
Interesting fact - Matt is a food scientist by profession. He has both a bachelor's and master's degree in food science, in addition to a credential as a Certified F865ood Scientist from the Institute of Food Technologists. He currently works as an application scientist for a manufacturing company that supplies other food manufacturers with ingredients. Matt works with fibers in particular, and he currently works on bakery applications and meat alternative applications for his company's ingredients.
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The start of the battle
The crazy thing is it's one thing to have a family history of multiple sclerosis and autoimmune disorders. However, it's more difficult to come to terms that you might actually have a disease like MS.
While we now suspect Matt's battle MS may have started slowly in the year or two prior, the real battle with started this year in February 2021 shortly after Caleb was born. When the first major symptom showed up, we didn't even suspect it might be MS. It started as this really weird fatigue and lightheadedness. In Matt's words, it was a fatigue like he had never felt before. It was so bad that he was concerned about falling asleep at the wheel while driving to and from work.
At first, we thought it was just fatigue from caring for a newborn baby. Then, we thought it might be due to sleep apnea since we had been trying since November 2019 to get him diagnosed. (The pandemic kept throwing a wrench in our efforts to get a sleep study done.) Matt contacted his doctor and scheduled yet another sleep study - this time a more accurate in home study. The results quickly came back that he did indeed have sleep apnea. He was averaging 25 apneas an hour at night. Kind of scary if you think about it!
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So, with the help of his sleep doctor, Matt was put on a CPAP machine in early March. Unfortunately, while he was sleeping better, the fatigue and lightheadedness only got worse to our confusion. It is hard to understand how you can get a good night's rest and yet feel extreme fatigue, but that is MS for you.
It was when the other symptoms rapidly started piling on, one after the other, that we realized something was very wrong. First came the tingling in the arms and legs. Then the muscle weakness that would make his legs try to give out when he tried to go to a standing position. Next the speech problems and hand tremors started. Scariest all was the numbness in the legs that began showing up at random times. These were our signs that this was not simply being tired from a newborn or trying to get use to a CPAP machine. There was something truly wrong. We were watching his body attack itself, but we had no idea why and were afraid of the worst case scenario.
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Seeking a diagnosis for MS
It is not a simple process to diagnose MS. The diagnostic process involves ruling things out, as much as it involves confirming evidence that it might indeed be MS. Even then, it takes years to diagnose the type of MS, which is based off of observing how symptoms persist between relapses.
The initial MRI on Matt's brain was done in July. When Matt finally saw the neurologist for the first time, he was told there were lesions on his brain that had characteristics associated with MS. However, part of the reason why Matt's symptoms were less severe at that time was that none of the lesions were currently active. If it was in fact MS, it was in remission by the time the brain MRI was done. To be able to diagnose him with MS, they would need to do a second MRI to see if there were any lesions on his spine, as well as a lumbar puncture to see if it revealed the unusual immune system activity associated with MS. So, a follow up appointment was made with the neurologist at the end of September and the additional tests scheduled in the interim.
The spine MRI was a simple thing to do. However, the lumbar puncture was a disaster. The first attempt to do the lumbar puncture actually failed. Matt is a tall, sturdily built man, and it turns out local anesthetic doesn't work too well on him. He felt the pain of the needle all the way in. They went through over ten bottles of lidocaine in an attempt to anesthetize the area to do the lumbar puncture, and he still felt the needle going in. To compound the problem, they found the needle they tried to use was too short!
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Thankfully, they decided to reschedule the procedure for another day and to do it under light sedation. Good news was they were able to successfully numb him this time and complete the lumbar puncture with a longer needle. It was also the last test he would need for a diagnosis. The spine MRI showed a single inactive lesion, and the lumbar puncture showed that he had 8 oligoclonal bands in his cerebrospinal fluid. The presence of so many bands in combination with the lesions on his brain and spine were enough to officially diagnose Matt with MS.
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Finding hope in HSCT
Did you know over a million people through out the United States alone suffer from MS? It also effects each person differently, but it eventually gets worse in everyone who has the disease. Despite the debilitating effects of the disease and the large number of people around the world who suffer from it, there is still not a cure for it.
Right now, the standard protocol for treating MS in the US is to use what are called disease modifying therapies (DMTs). However, these drugs just slow the progression of the disease. Even worse, once the damage is done, there is no way of reversing that damage. We knew when we received a diagnosis that we did not want to live our lives in fear of watching this disease slowly take over Matt's body.
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There is where we knew we had a source for hope though. It comes in the form of a treatment called hematopoietic stem cell transplantation (HSCT), where chemotherapy is used to wipe out the defective immune system and the patient's own stem cells are used to reboot the immune system. While it is only now being explored through clinical trials to be approved by the FDA as an official MS treatment, it has been used in the treatment of MS for over twenty years. In fact, Matt's cousin had it done, and the treatment successfully stopped disease progression, he has not had a relapse in the five years since.
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While HSCT cannot reverse the damage done to the brain and spine, it is the closest thing there is to a cure today. Even better, HSCT offers even more hope for Matt as it is even more effective when used as a first line of treatment so that it is used to stop the disease from doing more damage in the first place. The increasing number of studies have demonstrated that as HSCT treatment protocols have been refined, it is not only as safe as traditional DMTs, but it is truly is the only treatment that has been successful in stopping the disease long-term. (example study: https://jamanetwork.com/journals/jama/fullarticle/2720728).
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Where to pursue treatment
So, when we received the official diagnosis of Matt's disease, we knew this would offer him and our family the best chance of living a life free from MS. Unfortunately, insurance would prefer Matt stayed on the less effective drugs from DMTs for the rest of his life or he gets much worse, which either way inevitably results in the disease continuing to progress.
While there is a HSCT trial in the US being held at nineteen different locations around the country, it is trying to gain approval for HSCT as a last line of defense. It is also extremely expensive and uses myeloblative chemotherapy, which uses high doses of chemo and destroys the bone marrow in the process. It comes with higher risks, long treatment protocols, and a recovery period that lasts 6-12 months after the treatment is completed as it takes a long time to rebuild the immune system when the bone marrow is not there to help provide immune memory.
It is for this reason that Matt's cousin went to a national research hospital in Moscow to receive HSCT treatment, and Matt has decided to do the same in next year. (See https://hsct-russia.com/). While it still comes with a hefty price tag, it is not as high as the costs here in the United States. The $70,000 we are trying to raise by March 1, 2022 would cover the $53,000 cost of the treatment, the travel to and from Russia, as well as supplement our income while Matt is off work for the treatment and the initial few months back home while his immune system recovers.
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The national research hospital offers one of the best HSCT treatments for MS in the world. Dr. Fedorenko has done over 2500 HSCT treatments for MS, and he operates the clinic out of a national medical and surgical hospital in Moscow. The entire month in Moscow is spent in the hospital, and Dr. Federenko makes sure every treatment is tailored to the needs of the patient.
As this HSCT treatment protocol uses non-myeloblative chemotherapy, the lower doses of chemo leave the bone marrow intact. This means the risks from chemo are lower, the recovery time from the treatment is shorter, and it should only take about three months after Matt gets back home for his immune system to bounce back. Since Matt's bone marrow won't be affected, it also means he will still have immune memory and won't need to be revaccinated.
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This is our best source of hope
HSCT through the research hospital is Matt's best hope for living a life free from MS. It will only be through the generosity of others that we will be able to make this happen. As we continue this journey towards raising those funds and Matt receives HSCT treatment, it is our hope that this page becomes a place to document that journey and share how this treatment helps change the road ahead of us.
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Thank you to all of you who are supporting Matt and our family in this journey. Your kindness, support, and generosity are greatly appreciated.