Evelyn's Memorial Fund

Evelyn Arlene Tuthill was born at 35 weeks, but wasn't a typical premature baby. She was able to go home right away with her mom, Haley, and was a perfect and happy baby for the first 2 weeks. After that she began getting fussy and doctors thought it was colic and then allergies. She would scream more and more each day and they knew she was pain. She has gone through extensive testing and finally had a test called  Whole Genome Sequencing done. They found a mutation in a gene called UBA-5 which has never been seen before, which means Evelyn is the only one in the world with this. Or she is the only one reported. They cannot confirm that this mutation is causing Evelyn's problems, but UBA-5 is found in many different types of tissues in the body including the brain. This is an extremely rare mutation to have. The doctors have been very clear that there is not cure for her, but that they can only make her comfortable. 

As of now, she is having many seizures that they can't get under control with any meds and is causing brain atrophy in Evelyn. This is degenerative and the Tuthill family had to make the difficult decision to admit her into hospice this week. Hospice will come to their home to help give her meds and make her comfortable. The family also has to start looking into funeral arrangements for Evelyn, which insurance does not cover.

Evelyn has a bucket list that  they are working diligently to cross off as many items on this list as possible right now. 

https://www.facebook.com/notes/haley-tuthill/bucket-list/10151768541023760

This account was created to help with funeral costs for Evelyn to the tune of $10,000-$15,000. We are also working to help Evelyn get to Disneyland to cross an item off her bucket list and meet Mickey during an upcoming trip to California.