Mathea Manley Representing the CMD Community at Rare Disease Week on Capitol Hill

January 28, 2018

 

 

At the end of next month, Matty will travel to Washington D.C. to represent the CMD community and advocate for congenital muscular dystrophy on Capitol Hill. Her voice, and yours are vitally important to maintain funding dedicated to research and care. We are grateful to Matty and her family for sharing their story.

As a parent preparing to have a child you read of all of the potential disabilities that your unborn child could have. Most of them you’ve heard of and you probably donated to the cause a time or two, but you don’t understand them because the chances are 1 in 2,500 and that seems so rare that you brush it off. What happens when your child ends up with a disease that is 1 in 500,000, or you have never even heard of their disease? It’s so unfathomable, you never considered it a possibility! All of the sudden you are so alone and confused on what the future holds for your child and your family.


Four years ago we spent a week in the hospital with my then 3 month old baby. Nobody seemed to know what was going on with him, but something was wrong. From then we began the journey of finding answers. We met with doctors and therapists, and I held my crying baby for test after test, worrying that most likely this blood draw wouldn’t be the last and the answers were going to come back the same as the others. Negative. We would worry about how many tests we were running and how much it was going to cost even after insurance, but how do you stop trying to learn what is going on with your child? How do you say, “No, we’re not going to run that test. It could be the answer, but insurance won’t cover it.” You don’t. You call the hospital and ask about payment plans and ask family for help. You worry about bills and hope that soon an answer will come, because you’re not sure where the money is going to keep coming from. We continued with multiple therapies a week. Multiple doctor appointments each month. We met other parents in these “regular” places that looked the same. They were stressed and waiting for answers. They were disappointed in not knowing what was going on with their child. They were helpless in not being able to help their child. They were devastated at yet another response of “We don’t know” from doctors. We all recognized these struggles in each other. This went on for two years before we received our diagnosis: a form of Congenital Muscular Dystrophy.

 

Now, my day as a parent with a child with a rare disease involves juggling multiple therapies a week, check-ups with specialists, school  and making sure his needs are met there, a regular routine of three respiratory devices, shopping and preparing a specialty diet, and loving all of my children and husband. In all of this, we as parents of children with rare diseases have to navigate an intricate and complex Medicaid system to assure that our children’s basic daily needs are being met. This involves numerous hours of reading dense material. Numerous phone calls, voicemails, and emails for clarification and making sure that the paperwork didn’t get set on a desk and forgotten. This involves getting reports from different specialists and therapists saying that your medically fragile child does in fact have these needs. For a parent, time is already limited. As a parent of a child with a rare disease, a significant portion of that precious resource is having to be spent on paperwork and processes and red-tape to ensure we can maintain quality of life for our child.

 

 

Financial cuts to Medicaid and rare disease funding will affect every aspect of individuals and families with rare diseases everyday lives. Without the continued funding for rare disease  research we would still be dealing with the agony of the unknown as many individuals and families still are. Without funding and legislation for research into treatments and cures for rare diseases many parents will be forced to watch their children suffer more than they need to. Without legislation protecting and supporting Medicaid and it’s programs, individuals and families will be put in situations that they will have to make medical decisions that will be devastating to either their health or their livelihood. Understaffed offices will be harder to reach, slower to react, more likely to make a mistake or overlook us, and ultimately inhibits their ability to effectively help us navigate through an overwhelming and complex aid program.


Rare Disease Week on Capitol Hill gives me the opportunity bring awareness to our legislators on the detrimental impact that these budget cuts would have on our families, start a conversation on simplifying processes for aid programs, and to share the importance of support in rare disease research.

 

 

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