For our Amelia

On March 30, 2017 Philip and Jennifer Palermo welcomed the love of their lives into the world.  A beautiful, cherished little girl named Amelia.  Her birth was an unbelievable gift  after experiencing a six year struggle with infertility.   Eighteen months passed, months full of love, joy, and firsts. Amelia then began showing concerning signs in her development.  An eight month journey of doctors, specialists, and therapies ended with devastating news. On 6/6/2019,  Amelia was diagnosed with Infantile Batten’s disease - a rare genetic, degenerative disorder impacting brain function resulting in seizures, deteriorating  motor function, loss of speech  and sight.  Batten’s is slowly taking her from us.  Based on the MRI, her neurologist believes Amelia has about a year.  There is no known cure. There are two cutting edge research studies currently being conducted on Batten’s disease.  One is a gene therapy just approved by the FDA for use on humans and another on the CLN2 gene using enzymes. Amelia’s mutation is on the CLN1 gene. All who love her are  committed to providing the best life possible for whatever time she has left.  There are, and will be, mounting medical bills, costs for therapies, potential travel, and other unknown incidental expenses.

I know Jennifer and Philip would never ask for financial help, not because they are too proud or private, but  because they would be the ones giving to others. Their kind hearts are big and very much in pain.  My hope for this GoFundMe campaign is to remove some of the financial strain so Jennifer, Philip, and their family can focus on celebrating and cherishing  Amelia. They need their energy to fight  for possibilities and hope.   Thank you for any amount you feel able to give and if you are unable, please wish them love and time.