Help us reach the goal in honor of Keira's 8th Birthday! Keira's Birthday Gift of LIFE!
Keira started life like any typical child. As she grew she loved to play, sing, dance and climb. In September 2015, we were told that our amazing and beautiful 5 year-old daughter has Sanfilippo Syndrome, (MPS IIIA). We were told that she would soon lose the capacity for speech, walking and eating, and would die in her adolescent years. We were crushed. Sanfilippo Syndrome (often called ‘Childhood Alzheimers’) is a rare, terminal genetic disorder in which the body lacks a specific enzyme to break down toxic waste. It builds up, primarily in the brain, and takes away everything a child has learned within a couple of years. On average, children with Sanfilippo pass away in thier teenage years, and it is preceded by severe disability.
Over the past year, Keira has lost her speech. She, unfortunately, is in the throes of this disease. Over the next couple of years, she will lose the ability to walk, swallow, and ultimately the functioning of vital organs while in constant pain. As a parent, can you even imagine??? This will happen with 100% certainty and no child has survived Sanfilippo. Currently, there is no cure, nor is there any proven treatment to slow the condition. It is a parent’s worst nightmare and an unfair sentence for any innocent child. The heart breaking truth is that there ARE promising clinical trials happening. Keira needs some type of treatment very soon.
Birthdays are an emotional time for us. A point in time marking what should be another happy year. We feel like Keira is still with us...and even might still understand that she is having a birthday this year. She will be 8 years old. Without intervention, this next year will be much different, going rapidly in the wrong direction.
We don't stop fighting for her, and even now, we find HOPE, thanks to supporters like you! Please help us raise awareness and funding for research for treatments and a cure! TIME is the one thing Keira and other children like her do not have. Will you please help us reach our goal today by supporting Keira's Birthday Gift of Life?
Our deepest thanks,
The Esposito Family (Elise, Dave, Keira and Keaton)
All donations go directly to Cure Sanfilippo Foundation (Tax ID: 46-4322131), a non-profit 501c3 organization and will be used to fund research for the treatment of Sanfilippo Syndrome. All donations are tax deductible. For more information on the Cure Sanfilippo Foundation, please visit www.CureSFF.org.