My Great Strides Story
Hi- It’s that time of year again…. Liam’s 14th Annual CF Letter! But first, allow me to give you a recap of the past year. When we last left off on the Liam Show, I had been in the hospital. I left the hospital with an IV pump strapped to my back, so that happened for about 3 months. I was King Triton with IV’s running at HdG Middle and then Scar in the Lion King over the summer, and then I had to “Be Prepared” for the dreaded year- 8th Grade!! (Cue scary thunder and lightning) My school year has been relatively hospital free for the past year, except for about 2 weeks ago. I had some mysterious illness that caused my tongue, uvula, and eyes to swell. It also made my vision extremely blurry. I was in the ER at Upper Chesapeake for 9 hours, and when I left, no one knew what was wrong with me. I went to the specialized kidney doctors (Nephrology) at Hopkins, and surprise, surprise! No one knows what is wrong with my kidneys. However, suddenly my symptoms disappeared, and my kidneys seem fine. Who knows. I’m visiting the National Institutes of Health in DC for my Non-Tuberculosis Mycobacteria (NTM- Yes I still have that) in a few weeks to participate in study and get more drugs.
I started this letter two weeks ago and a lot has happened since then. I had a great visit to NIH, and I watched this really cool guy named Chris Urquiaga play piano and sing. (He’s super good, you should buy his album, Complete). The people at NIH put me on some more meds, including a medicine only NIH can get directly from FDA and it’s used to treat Leprosy. NTM- is somehow related to leprosy. And then this week I ended up in the hospital. Again. I didn’t expect to be admitted but I felt sick and my lung function has been going down since last time in hospital.
In fact, this is my second year of writing a CF letter while in the hospital. But anyway, I’m currently sitting in my hospital bed writing this letter. I’m in 10 north, the teen side, for the first time, as opposed to the children’s side, 10 South. 10 North has a stocked Teen Room, (that I’m not allowed to go to- because of my CF and infection control) that has many fun items (pin ball machine and air hockey and piano) and lots of games and movies. And you know what gets those games and items? People donating Money! And do you know what else we use money for? CF Research! At last! The section of the letter where I ask you guys for money. We need people to donate, to help find a cure for CF or at least improve treatments and drugs and allow me to live longer. But you must be saying, Liam! WHY does money help find a cure for CF? WHY does this matter? Well, you probably weren’t asking those questions. But that’s not the point. Your money helps research lifesaving drugs such as Hypertonic Saline, Tobramycin, and a new drug in development, VX-661. I have used both Hypertonic and Tobramycin, and those two drugs have helped tens of thousands of CF patients. VX-661 in particular, when approved, will help CF patients with a special mutation like mine. The money is incredibly important, since it pushes helpful and lifesaving drugs and treatments through development. If we don’t have drugs and treatments, then obviously we don’t have a way to treat or help people with CF. Your continued help, support, and generosity will never fail to amaze me. I’ve been doing this for 14 years, and everyone has been there all of the way. I guess I just want to say thanks. But I need your help again. I need you to join Team Liam at the soon-approaching CF Walk (May 21st), I need you to walk, I need you to donate ,I need you to ask your friends and family and coworkers and strangers on the street to donate to Team Liam. You really can make a difference. Thank-you!
See you there I hope,
P.S. Annual Mom disclosure- this is first year I didn’t have to type the letter as Liam dictated. It’s all Liam. All I had to do was a lot (I mean a lot) of nagging and withholding Easter basket until it was done! It’s been a rough year health wise for us both- hoping this week’s treatments will put us back on the mend! More walk details: Sunday, May 21- Tollgate Park/ Heavenly Waters beyond Equestrian Center- Bel Air MD - 8:30 registration- 9:00 walk begins (or many don’t walk at all and just enjoy the free food, fun and silent auction). Thanks for making a difference in Liam’s life! We appreciate everyone’s support beyond words!