My 9 year old daughter Amaria has been diagnosed with Niemann Pick Disease type C. It's a very rare genetic disease that is aggressively progressive and fatal. There is no cure, or fda approved treatment for this disease BUT Amaria has been granted compassionate use of a trial drug called Cycledextrin that is believed to slow the progression and hopefully buy us time to find and fund a cure. The nearest treatment site is RUSH Memorial in Chicago Illinois. Amaria will need this drug every two weeks. We are currently flying back and forth from Denver to Chicago every 2 weeks. This has taken a financial toll on my family as our only income is ssi and parent CNA. while struggling to keep the bills paid at home we have the added expense of a 2 hour drive and a flight and food and ground transportation and lodging. Back and forth... Every 2 weeks. My car is currently under repossession as the result of having to choose between bills or possible life for my baby. We have been fundraising for a very longtime and haven't had any help. Angel flights has helped us twice but won't help anymore.
This diagnosis has devastated me! I'm consumed with giving my baby quantity of life I haven't even considered how bad quality has become. Please help me help her! This disease has taken so much life from my baby, I can't let it have her! If we can't find help, we can't continue to make these trips which means my baby can't get treatments. Any and all help would be so appreciated.
- Mary Markman
- MARIUS NEACSIU
- Stefan Domocos
- Ilie-Rusu Samir
- Kim Coppola
Organizer and beneficiary
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