Picture of my Little Buddy
My name is Roy Zeighami. I live in the Dallas area with my wife and two kids. Our son Reed (born in 2007) has Sanfilippo Syndrome Type A. Sanfilippo Syndrome is a neuro-degenerative disease and children with the disease have an average lifespan of 15 years.
We spent three wonderful years between birth and diagnosis with the impression that Reed was a healthy child. In December 2010, we followed a set of clues that led us to a shattering diagnosis of Sanfilippo Syndrome.
Reed is huge, both his head and body are off the charts. Our pediatrician was concerned that something wasn’t right. She sent us to Scottish Rite hospital for an x-ray. The doctor found minute skeletal findings; though Reed is large, his bones are shaped like that of a short person. Ultra-sound imaging found that his organs were slightly enlarged. A test in his urine found accumulated GAGs, a compound accumulated in people with a Lysosomal Storage Disease (LSD). In January of 2011, we were crushed to learn that he has Sanfilippo Syndrome or MPS IIIA.
To help fund research for a cure, I have joined forces with some of my best business colleagues to form The Sanfilippo Foundation for Children, or SF4K for short. We will be sharing our plans and goals in the next few months.
This blog is about us and our life. It doesn’t necessarily reflect the opinion of The Sanfilippo Foundation for Children.
Hello Roy. My name is Kristi Abel and I live in the Waco area. I have a 9 year old boy with Sanfilippo Syndrome. He is type C. I would love to chat sometime. I may try to bring him up to your benefit next weekend. We would love to meet you. We have only met one other family that came down to our benefit last August, and we have stayed close with them. Their son Nathan passed away on April 17. He had turned 13 two days prior. His mother and I have been good support for each other. It helps to talk to someone who goes thru the same daily struggles. Please call me at any time. My cell # is 254-723-8688. I am married and we have 3 boys. Evan is our middle son. We are going to the MPS day in San Antonio this Sunday. Are y’all going to be there?
Would love to here back from you.
Kristi Abel
Hi Kristi,
It is so awesome to hear from you! I really do hope that you can make it out. I have been amazed out how many people have reached out and said they would drive to visit us. It is just a modest event, I hope that you won’t be disappointed if you come out.
Thanks,
Roy
The Abigail Alliance for Better Access to Developmental Drugs is here to help as best we can. Thinking of Reed and the family, Frank Burroughs
http://www.abigail-alliance.org
Frank, thank you for your work and that of the rest of the team at Abigail Alliance. Let’s get the Compassionate Access Act passed so no one ever has to go through our pain!