It’s been a while since I’ve been on Tumblr, but I’m coming to you today to ask you for one big favor and tell you a little about what’s been going on with my sister, Hero.
In January, Hero was diagnosed with an extremely rare blood disease called Paroxysmal Nocturnal Hemoglobinuria (PNH). This disease is often diagnosed in people three to four times Hero’s age, making her one of very few teenagers to battle with it. On top of that, the number of her red blood cells effected by the disease is significantly higher than the number that they typically see upon diagnosis. Because of PNH, it is hard for her to walk for extended periods of time, function like a normal 13 year old, or even attend school on the regular. We are at the hospital every week, sometimes for four hours while she gets her IV (of Soliris, the most expensive drug in the US currently, clocking in at over $400,000 a year), sometimes overnight because her body reacts poorly and she has to receive blood transfusions and undergo observation. PNH has truly turned our lives upside down and this fight has only just begun. To read more about PNH, please visit pnhsource.com.
The only cure for her disease is a 10/10 bone marrow match. Our doctors have searched international registries to no avail. We believe that because of our Ashkenazi Jewish ancestry, the chances of her finding a match are significantly lowered than if we were simply of eastern European descent.
This is where you come in. If everyone that reads this post who is between the ages of 18 and 44 signs up to be on the bone marrow registry, the odds that we find a match are greatly improved, and even if you aren’t a match for Hero, you could be a match for someone else who is watching the clock tick as they wait for someone to be able to save their life. Joining the registry is as simple as answering a short questionnaire about your life and your health. The Be The Match organization then sends you a kit with four cotton swabs. You simply swab your mouth in different places for ten seconds per swab, attach them to the card, and mail your samples back in the pre-paid envelope.
Please, please, please- if you find it in yourself to do it, join the registry. Follow the links at the end of this post and take the leap. You could be the piece of the puzzle that saves my sister’s life. Also, SHARE THIS POST! When more people see this, more people are likely to register, and that is truly the world to me and my family at this point. Be a Hero for Hero. Click through these links and then send them to your friends! Take cute selfies while you swab your cheeks! BE THE MATCH.
http://join.bethematch.org/hero4hero
http://join.bethematch.org/hero4hero
http://join.bethematch.org/hero4hero
