Last summer after returning from my Make a Wish trip, I caught the common cold and nearly died. I was fine in the morning but come evening my parents were rushing me to the Emergency Room. By the time they got me on a gurney, I was in full respiratory arrest. I was sedated and intubated.
After a week on ventilator support, it was apparent that I was not going to recover quickly so I had surgery to place a tracheotomy and a G tube. I lost all the mobility I had gained through therapy and hard work. Before this respiratory crisis I was able to walk around on my own. Now I am dependent on a walker in the house and use a wheelchair for anything further.I require assistance just to transfer from a chair to standing or into my wheelchair.
The scariest part about this story is that this could happen again at any time, without warning. I often wonder what if we made it to the Emergency Room five minutes later?
It was during this hospital stay that my status was moved to Juvenile Refractory Myasthenia Gravis. I’m dependent on a procedure called plasmapheresis that I get 3 days a week. I’ve had over 300 so far; however, this is not a cure. In addition to that I’m on steroids, immune suppressant medications, chemotherapy and so much more.
All of these treatments are very intense and leave me with little quality of life. I experience severe joint and muscle pain from the chemo and other drugs, chronic wounds due to the steroids, as well as chronic severe nausea, fatigue, electrolyte imbalance and increased bleeding due to the plasmaphereses. My family and I are taking the next step in treatment and hopefully I will be getting a bone marrow transplant so I can live a fuller life.
Unfortunately, there are very few treatments for MG that are FDA approved and that includes Bone Marrow Transplants. Insurance at this point has denied coverage even though we have petitioned for reconsideration. That means we need to find a way to pay out of pocket for the full amount of the transplant, about $500,000.
Family and friends have started a campaign to raise funds for Children’s Organ Transplant Association (COTA) in my honor. All contributions to COTA will be used to assist with transplant-related expenses.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.