Omnitrope - Richard's Fight with Fanconi's Anemia

Dear readers,

 

My name is Richard Lucarelli, and I was born with a very rare genetic disorder called Fanconi's Anemia. Fanconi's Anemia is so rare that only 31 babies a year on this planet of over 7 billion people are diagnosed with it every year. Since 1976, there have been a total of 314 cases treated. I'm one of these unfortunate people. Fanconi's Anemia is a very painful, and at most times, a frightening disease to live with - when I was diagnosed, I was told that I wasn't going to live to the age of 13, like other F. A. patients. I have spent my entire life in and out of the hospital, and in all honesty, I've been lucky so far.

 

Most F. A. patients are born with physical deformities. I have small eyes, small lungs, and my thumbs hyperextend. Some F. A. patients have it worse, like being born deformed, without limbs, or worse. Not only that, but about 90% of us develop Acute Myeloid Leukemia, and end up needing a bone marrow transplant. This was the case for me.

 

When I had my transplant, there was a total of 13 of us with F.A. The "treatment" occurred over the course of 3 years, and the protocol(s) used in our transplants were experimental and very new. We were all guinea pigs, and only 6 of us survived - even now, none of us know what the long-term effects of the drugs that they used will have on us. I am, however, aware that I'll never get to have children, and that, to date, there hasn't been a single case of someone with F.A. living past the age or 54 or 55. I myself am 43. To put my life into perspective, I've gone through 32 surgeries and, because my immune system is so suppressed, I'm forced to struggle and fight for my life in the hospital every few months. This ended up being a cycle that repeats over and over again, year after year. You would think that the bone marrow transplant helped, that it would have done something to improve my condition. In actuality, nothing changed. Not a single thing. The transplant suppressed my immune system, and as I mentioned previously, is the reason for my constant hospital visits. I had gone through with the transplant because all I ever wanted from it was the possibility of being able to live as normal a life as I could.

 

With the arrival of COVID-19, I can almost never leave my home. My doctors have repeatedly told me, I can't even tell you how many times, that were I to get COVID-19, with the way my immune system is, I wouldn't survive. They are adamant that I have no choice other than to stay inside. So, all day and every day, I watch the world pass me by, right out of my window. I can't do this anymore. I've been fighting for my life since I was a baby, and I didn't go through 32 painful medical procedures, including bone marrow biopsies every 3-4 weeks from age 0 to 23, just so I could sit next to my window and think to myself, "I wish I was a healthy person".

 

All I ever wanted was to have a purpose in this life - a chance to make a living for myself and not off my parents. It doesn't make me feel like myself, or something that I'm doing for myself, when I keep relying on them, even now. I can't even look at my face in the mirror anymore. I'm so sick and tired of being ill that the only realistic way for me to move forward is to reach out like this and try a fundraiser. You see, after my bone marrow transplant, I was still under my father's health insurance. They covered a drug for me referenced in the title of this fundraiser - Omnitrope. Omnitrope is an extremely expensive growth hormone that helped my immune system and basically turned my life around. This drug gave me back my immune system for 3 whole years of my life. The improvement was so significant that I was able to go to school and I become a medic. I was able to work and go out with friends. There really isn't a way I can describe the feeling of having a debilitating disease and not having a life to miraculously being able to live like everyone else does - "normal".

 

Without my father's insurance, getting a health insurance policy on my own with my pre-existing conditions is financially impossible. It's over $1,000! I'm currently on Medicare, and I attempted to apply for cost coverage for Omnitrope, but it wasn't approved because it's purpose is defined as for "muscle wasting", with them only covering the cost for those with AIDS. This is just something so unfair. Omnitrope is the drug that literally helps to keep be alive, both physically and mentally, with a healthy immune system, and I'm denied because I don't have muscle wasting and/or AIDS? My illness, struggle, and life deserve just as much care as someone with muscle wasting or AIDS, especially if the drug/treatment is effective! Quite frankly, I can't live any sort of "life" without Omnitrope, and I earnestly need it. It's impossible for me to continue looking outside my window after everything I've been through. I've been fighting so hard to stay alive and there's no way I'll give up like this. I want to be able to live for myself, support myself as best I can, and maybe even leave my beautiful nephew something when my time comes. In my desperation, I took out a personal loan to try and get a chance at being able to pay for this drug. Unfortunately, I only qualified for one refill - a cost of $3,000 a month. The silver lining is, like those with AIDS, I don't need Omnitrope repeatedly. Once I take it for a year, I won't have to re-take it until 3 to 4 years later. At this moment, I need to take Omnitrope for 7 to 8 more months, which brings the amount I would need to live for the next 4 years to about $25,000 (I don't know how much the fees will be from this fundraising process). As it shows in the fundraiser image, the last time I was able to fill the prescription for Omnitrope was on 8/30/21, with the personal loan I took out. I've been off it since then, and quite literally wasting away. I would be eternally grateful to receive any and all donations - anything that would help me get Omnitrope as soon as I can.

 

I'm a pretty proud person, and I've never asked anyone for help like this before, but I'm just so desperate to have a life. To be able to look at myself in the mirror, feel good about myself, and go about some semblance of a normal life, and enjoy it as best I can is all I want. Being able to have a job and socialize again all by simply having access to this drug would be a dream come true. One that I would be eternally grateful for, all because I didn't give up. I can't tell begin to describe how many times I lost hope. It isn't easy, and I wouldn't have even made it this far without those who have supported me throughout my suffering. I'm a fighter, through thick and thin, but I just need a little help right now. So, thank you for reading my page - I appreciate you even just taking a few moments out of your day to listen. God bless you all. I hope and wish you all good health.

 

Sincerely,

 

Richard Lucarelli