Thank you for taking the time to read about our story and considering helping our cause. We are seeking support with our heavy student debt that is keeping us from being able to save for a handicap-accessible home, wheelchair van, and the many things my son requires for support.
My son initially had some issues with feeding and low blood sugar and spent a couple of days in the NICU, but we were sent home once we were stable. After a week at home, we noticed that he was just not thriving the way his twin brother was. After several invasive tests and over a week at the children’s hospital we received a diagnosis of congenital muscular dystrophy (CMD). In short, CMD is muscle disorder that makes muscles weaker than they should be. This can make simple tasks like lifting your own head and limbs difficult or impossible. It becomes dangerous when the muscles that are responsible for breathing become involved. We have since learned the specific type disorder he has is called LAMA2-CMD, one of the most common types of CMD, but still ultra-rare.
Since that time of diagnosis until now, we have learned so much about being special needs parents and how to best support him. He is one smart little guy who has been a chatterbox since early on! We have been fortunate to have collected many adaptive items for him to best be able to explore the world from a stander where he is able to experience weight-bearing, to his scoot chair where he can “chase” his brother around the house. We have been spending so much time enjoying our boys that we really don’t know anything different than life as it is now. While there are moments when emotions fill us with fear of the unknown, we know that each day we have the opportunity to do better, and that is just what we will do! While we are not living for a “cure” we are living to make life the best it can be for our son and others with this frustrating disease.
Currently, there is no “cure” for LAMA2-CMD, however, there are many promising therapies in the works. Research requires funding, and that is where you come in! We are making a lofty goal to promote research for this unique condition. We have many creative thoughts on how to support our goals of finding therapies to enhance the lives of those affected by LAMA2-CMD and the most important one right now is to support research efforts. We have held many fundraisers and have raised over $20,000 so far, we have lofty goals, but this is a start! With so much of our focus on making the world adaptive for my son and fundraising, we are just feeling so heavily bogged down by student loan debt.
My husband works very part-time as he is the primary caregiver for our twin sons since the pandemic started. Due to the risk of illness, we could not put my sons in daycare. I am considered self-employed and pay for our health insurance premiums, currently $2000 per month, not including deductibles and max out of pocket which we reach each year due to my son’s diagnosis. We feel like we are drinking from a fire hose daily and student loans are just such a burden we are unable to put a big enough dent into.
We appreciate you taking the time to consider supporting us in becoming student debt-free so we can focus on our children!