Scarlett's Miracle Fund

We are all so overwhelmed and grateful for the outpouring of support and prayers we received for Scarlett, It is so amazing to see how many people care about her and we are truly thankful. We are happy to announce that Scarlett was released from Doerbechers Children Hospital on March 14th on an outpatient basis but her and Tori have a long road ahead of them. Many of you have asked how you could help or to let you know if they needed anything....Under most circumstance, I would not ask for financial support but then I guess you never expect something like this to happen to your family. We are very lucky that almost all of Scarlett's medical care has been paid for but there are many other expenses ahead of them. Tori lost her full time nanny job when she had to stay in the hospital with Scarlett for 2 weeks. Now she has to return to Doernbechers 3-4 times a week for testing and every other week for Scarlett to receive her drug therapy. Tori is currently searching for a part time nanny job but that proves to be difficult since she will need to bring Scarlett and the price of daycare for a special needs child is extremely costly.  One of Tori's ideas is to start an in home day care of her own but due to Scarlett's weak immune system, she will need to wait a few months before she can expose her to other children.  If you don't know Scarlett's Story, here it is.....

On March 4th, 10mnth old Scarlett was admitted in Doernbechers Children’s Hospital ICU. Scarlett has been diagnosed with Atypical Hemolytic Uremic Syndrome (aHUS). It is an extremely rare disease with only 600 current cases in the US and is caused by gene mutation or genetics. aHUS causes abnormal blood clots to form in the kidneys and blocks blood flow. Red blood cells break apart as they squeeze past the blood clots which results in anemia, high blood pressure and eventually kidney failure. Though there is no cure for aHUS, in 2012 a new drug treatment called Eculizumab became available and changed this deadly diagnosis into a manageable and treatable illness. Last Wednesday, Scarlett had a permanent picc line put into her jugular which will allow her to receive the Eculizumab IV treatment every 2 weeks. This treatment will continue for the rest of Scarlett's life or until a new treatment is discovered. We are only on day 14 since diagnosis so we still have a lot to learn about the continued care and costs that will accrue.

Please help Scarlett and Tori during this difficult time. I can't imagine how hard this must be on a 22 year old single mother. Right now what she needs more than anything is the ability to focus on getting Scarlett well and her own mental wellbeing.

Thanks again for any support you can offer, God Bless You All #wearpinkforscarlett