Abby Grace, her parents John and Wendy, and sister Kate.
“WE WILL NEVER GIVE UP UNTIL THERE IS A CURE FOR SANFILIPPO SYNDROME.”
– The Ferguson Family
ABBY GRACE FERGUSON
Current Age: 11 Home State: North Carolina Diagnosis Date: April 2013 Sanfilippo Type: MPS IIIA Parents: John and Wendy Sibling: KateWhat it felt like when we learned our child has Sanfilippo Syndrome…
When we found out that Abby Grace had Sanfilippo Syndrome, our lives were shattered. We could not imagine anything worse than having a child being diagnosed with a terminal illness. The thought of Abby Grace passing away before we would was an unbearable thought. Our hearts were filled with hopelessness, desperation and questions of “why our child”? She was healthy and perfect, only showed what we assumed to be a developmental delay. We were left feeling shock and disbelief, and the more we researched Sanfilippo Syndrome, the more hopeless we felt. There was no cure, or even a treatment.
How has Sanfilippo affected our child?
Abby Grace was a fairly healthy child and did not show signs of Sanfilippo Syndrome until she was around 5 years old. She began having difficulty learning basic kindergarten skills and had trouble staying focused. Learning was very challenging for Abby Grace and it has taken continuous repetition for her to retain skills. With the dedication of her teachers and through her hard work, she has learned to read on a 1st grade level, write and do basic math.
Although Abby Grace is 11 years old, she has the mind of a 6 year-old. Physically, she has low endurance and strength. Abby Grace has not been able to do the typical things that most children her age do. She is not able to tie her shoes, ride a bike or swim. She receives special education at school, along with Speech and Occupational Therapy.
How has Sanfilippo affected our entire family?
It is hard to get through a day without thinking about Sanfilippo Syndrome. Not only are we parenting a child with developmental delays and disabilities, we are trying to live life without thinking too much about Abby Grace’s inevitable future. Although we try to keep life and routines as normal as possible for Abby Grace, the thought of eating out, running errands and get-togethers with friends and family bring on feelings of worry and apprehension for us. Abby Grace’s behavior is impulsive and unpredictable, making it difficult to keep her safe in certain environments. When out in public, people look at her and see an eleven year-old, but then stare at her oddly when she speaks or displays immature behavior. On a positive note, our family has learned to take life one day at a time and be thankful for the blessings that we do have. We have learned to cherish the little things and keep life as simple as possible.
The hardest part of being a Sanfilippo parent is …
One of the hardest parts of being a Sanfilippo parent is balancing our feelings of helplessness with our feelings of hope. Our emotions are up and down constantly. We never want Abby Grace to know how dire her situation is. She is aware of death, dying and heaven. She has asked us on numerous occasions if she is sick. That is a very hard question to answer when you know that there may not be a cure in her future. We try to stay positive and hopeful around Abby Grace so that she will never have to worry about being sick. We want her to continue being the happy, carefree little girl that she is.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Sanfilippo Syndrome, although rare, could show up in anyone’s family. The occurrence rate is 1 in 70,000 births. We never thought we would be affected by a rare disease, but it happened. Our life’s mission is now to cure Sanfilippo Syndrome for our daughter Abby Grace, the many other affected children and those yet to be born.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We understand that times are tough for many people and that there are endless causes to donate towards. Our main goals are raising awareness and raising funds for research and a cure for Sanfilippo Syndrome. Our family and many other families greatly appreciate any donation, no matter the size. Even $1 donations add up. Your donations are tax deductible and 100% will go towards funding a cure for Sanfilippo Syndrome.
We are forever grateful for your time in learning more about Abby Grace and our family.
