This letter is going to be presented to a congressman working on the bill I mentioned last night, HR 5748. I hope I made it powerful enough to catch his attention!
Dear Congressman,
One of my cherished roles in being a mother is to guide my three children on the path to following their dreams and to pursue the career of their choice. For my two oldest children, I can encourage them to reach for the stars and dream big. For my youngest daughter, I have to tell her that she cannot dream.
My youngest daughter, Hannah, is six months old. She was born with an enlarged spleen, enlarged liver, and extremely low platelets. She has suffered through numerous procedures (IVIg transfusions, platelet transfusions, skeletal surveys, skin biopsies, etc.) and probably has had more blood draws than most adults. Finally, after five months of searching for a diagnosis, we now have one. Gaucher’s Disease, type 1 or type 3.
Hannah has one of the most severe forms of Gaucher’s disease, as her body produces absolutely no enzyme to help break down the fat in her body, so it gets stored in her spleen, liver, and possibly her brain (type 3). It is incredibly rare for a newborn to display this disease, so we feel we are travelling a road that very, very few have travelled before us.
For the physical aspects of this disease, she will be starting Cerezyme treatments via IV infusion every two weeks for the rest of her life. Picture if you will, an infant baby girl having to be painfully pricked with an IV and attached to a machine for 3 to 4 hours every two weeks in order to save her life. How does a mother explain this to a baby, a toddler, or even a young girl?
Cerezyme is one of the most expensive drugs on the market today. As an adult, the cost of her treatment will average about $250,000 to $300,000 a year by today’s standards. Even as an infant, the Cerezyme alone will cost over $30,000, and this doesn’t include other related medical bills such as doctor visits, use of the infusion center for the treatments, possible upcoming surgeries, etc.
Because of the numerous doctor appointments, weekly therapy sessions, and Cerezyme treatments every month, I am unable to return to work. We are now living off our small personal savings along with my husband’s income from his job to raise our three children in addition to dealing with our mounting medical debt.
We applied for Supplemental Security Income to give us a little assistance. We were immediately turned down once I shared what our current income was. Just like that, our chance for any help was dashed. What was even more shocking is that our income is not that great compared to most families of five. My husband and I have both been regularly employed for over 20 years, never needing government assistance. We have been “paying into the system” for years, and now when we need help from the system we have been funding for over two decades, the door gets slammed in our face.
Our family has gone from living a comfortable two-income middle-class lifestyle with a small savings to now being faced with possible future bankruptcy because of the cost of medical treatments and procedures for our daughter.
What makes matters worse is that Hannah is never going to get the chance to make a decent income as an adult. Since most insurance companies would probably not insure her because of the cost of her treatments, she is going to have to rely on Medicaid to cover her treatments. In order to qualify for Medicaid, she has to settle with only being able to work a low paying job.
How do I tell my daughter that her brother and sister can strive for any job in the world, but you have to resign yourself to the fact that you can’t have a “dream job” and instead will have to take a low-paying job for the rest of your life just to save your life?
Because of her Gaucher’s Disease, she has already been given monumental life obstacles to deal with over her lifetime. But this disease does not take away her ability to dream. You have the opportunity to give my daughter the chance to dream and to be anything she wants to achieve by supporting bill HR5748.
Thank you,
Very well written. I hope that you catch his attention and they start making changes in how they insure the disabled without keeping them down as you say. When I briefly needed medicaid about 15 years ago, I was flat out refused too, being told that epilepsy is not a disability. (At the time epilepsy was listed on their forms to check off under what is your disability?). I was told to quit my job if I really needed the insurance that whisper..”I would qualify for if I didn’t have any income.”
Very powerful. I hope you persuade them.
Very well written, keeping your family in our prayers as this bills moves forward.