Help Devonte Fight Duchenne Muscular Dystrophy

Hello all, My name is Stefani and this fundraiser is for my young cousin Christy Larsen to help her care for her son, Devonte, who was recently diagnosed with a life altering, life shortening diagnosis. Please read and help if you can. Even a small donation will help her through this financial hardship. As a mother, I cannot imagine what she is facing. And as a single mother, she is facing it alone.

Here is their story.

Devonte is a 5-year-old boy who, in early 2023, was diagnosed with the most severe type of muscular dystrophy, called Duchenne Muscular Dystrophy (DMD). Duchenne is a disorder in which the patient is missing dystrophin, a key protein in DNA that is essential in making and maintaining muscle. Without treatment, Devonte is expected to be wheelchair bound by his teens with a life expectancy in his 20s. As the disease progresses, even his smooth muscle fails, causing his heart and breathing muscles to fail. He presently has an unstable gait, with frequent falls and has difficulty with stairs. Devonte cannot run or jump like other kids his age.

At the age of two and compared to his twin sister, Devonte’s mother, Christy, noticed him falling behind in development. At this point, his pediatrician told her that he had a developmental delay. He did not run or jump with his sister, and he had not yet started talking. As the gap in their development grew, Christy requested further testing.

Devonte was approved for the “birth to three” program and was evaluated for speech delay when the COVID-19 pandemic hit and all treatment was halted. When he turned three, he was enrolled in a 3K program, where he was evaluated by a child psychologist and again was found to have a developmental delay. In the year to follow, the developmental gap between Devonte and Aaliyah widened, becoming more noticeable as they entered 4K. Again, Christy took him to the pediatrician and asked for further work up labs to see if they could find anything physiological to diagnose his worsening delays. His first round of labs came back with elevated liver enzymes, thought to be caused by a virus and requested a recheck of the labs for three weeks. The repeat labs resulted in even higher results which prompted orders for an ultrasound of his liver and additional lab tests. One of the tests she ordered was called Creatine Kinase which checks for muscle damage. Normal range for this lab in pediatric males is 39-308 U/L. Devonte’s results were 24,216 U/L. His pediatrician suspected muscular dystrophy and called in an urgent referral to the Children’s Hospital in Milwaukee, and they requested Christy bring him in the very next day (February 2023). So the next day, Christy drove the hour and forty minutes to begin the journey to diagnosis.

Devonte was evaluated and his genetic test results confirmed the diagnosis of Duchenne Muscular Dystrophy. The following July after much research on his diagnosis, Christy requested an evaluation by a Children’s Hospital Neuropsychologist. Devonte was then diagnosed with nonverbal autism level 2. Autism and other cognitive issues are common with DMD due to the lack of dystrophin in the brain.

The FDA recently approved Elevidys, a $3.2 million gene therapy for patients (to start treatment) in the age range between four to five years old, with a DMD diagnosis.. Clinical trials show it will help him build muscle and strength in patients, while halting disease progression. This drug can help keep Devonte mobile and prolong his life expectancy. Children’s Hospital in Milwaukee is one of very few hospitals across the country administering the treatment, and Devonte was recently approved to receive it.

After fighting for insurance authorization, for over two full months, he was finally approved to receive the treatment. Because Devonte will turn six in November, there is a small window in which he can receive this treatment. He is set to start pre-treatment testing on October 10th.

Elevidys is an intravenous infusion clinic that administers a virus that carries “micro-dystrophin”. The “micro-dystrophin” fills in the part of the muscle protein that he is missing. Since it is carried in a live virus, there is concern about transmission to his siblings. Devonte’s twin sister and two older brothers will not be allowed at home for the first one to two weeks. Christy will need to take time off work, as Devonte will need to be isolated at home and limit exposure to others. The treatment requires weekly appointments at the Children’s hospital Milwaukee for at least three months. This is an approximate 190 miles round trip from where they live in Manitowoc, WI. In addition, Christy was warned to expect hospitalizations for potential, serious side effects such as dehydration, liver injury, and heart enlargement. The treatment plan includes high dose steroids for at least two months to help suppress his immune system so the virus can do what it is supposed to. In a child with autism, this can cause serious behavioral changes which could potentially mean more time off from work for Christy.

Christy is a single Mom of four children (Devonte, Aaliyah, and their older brothers Garrett and Brevet), works full time, and is full-time college student studying psychology at University of Wisconsin – Green Bay where she is earning the highest academic honors. SChsity has been through a lot over the past few years. In 2020 she left an abusive relationship to raise the twins without any support from their father for the subsequent three years.In 2021, Christy’s father Gene underwent cardiac failure and received a heart transplant, living for months at a time at Froedtert Hospital, also in Milwaukee. Christy spent as much time as she could at his bedside and still continues to take him to and fro his appointment in Milwaukee. Just this month, due to the immune suppression medications for his transplant, Gene was diagnosed with cancer and Christy is taking him to and from his appointments for that new diagnosis. All the while, trying to maintain her full time work schedule and full time college schedule.

Christy is an extremely hard worker, taking night shifts for the differential, to support her family. And, despite having gone through so much, she continues to keep a positive outlook and is always willing to help anyone in need, even if she herself is struggling. Chastity has voiced concerns over her financial situation as venture into this next chapter in Devnote’s care. Along with taking so much unpaid time off work (PTO ran out during diagnosis phase appointments), she does not receive any child support from the twins’ father. Caring for a special needs child has expenses that go above and beyond that of a child without special needs. We put this GoFundme together to help her financially while she takes the time needed to give her son the best possible chance at a better quality of life. Christy must be prepared for extended periods of time off work due to the possibility of sudden hospitalizations in a hospital 80 miles from her home. Releasing her of the enormous financial stress will help her focus on Devonte and the care he needs, and make sure his siblings are well cared for. In addition, as an only child, she can be there for her father while he endures his cancer treatment.

All funds will be used for living expenses, travel and vehicle maintenance costs, extended stays in Milwaukee, and any durable medical equipment/home modifications to make life easier and safer for Devonte. Christy had been saving money and working on getting her backyard more Devonte friendly. Because of his mobility issues, the yard needs to be leveled to prevent frequent tripping and falling. Installing a fence would help keep him from wandering out of the yard, and adding a sandbox would boost his joy, as this is something he loves to play in! All of these plans were halted when she received news of the treatment approval.

Please help Christy relieve some of the financial burden of caring for a special needs child through his crucial medical treatments that he needs to prolong his life. And if there is a little extra at the end, we can give him that safe yard to play in!

You can follow his journey on Facebook @ Devonte’s Duchenne Journey.