Sedro Woolley, WA – Meet Ryder. Ryder is your typical 3-year old boy who loves to play with his toys and watch cartoons with his twin sister and his younger sister. He likes to wrestle with his dad and snuggle with his mom. Unfortunately, Ryder is 3-years old and has a rare fatal genetic disease.
On April 12th, 2016, a then 2-year old Ryder was diagnosed with MPS III B, also known as Sanfilippo Syndrome-Type B. On Average this disease affects 1 in 70,000 children and there is no known cure or treatment. Doctors told his parents to take him home and love him while you can.
In one terrifying instant, his parents were told their 2-year old “healthy looking” son was missing an essential enzyme for normal cell function. The disease causes his body to not be able to produce a specific enzyme that helps break down dead tissue inside of his body. This means, over time, a toxic material will build up in his brain and body, ultimately leading to severe disability and death before he reaches his teenage years.
Determined, hopeful, and terrified all at the same time, his parents set out to learn all they could about this disease so they could help find a cure for their son and any other kid that has been diagnosed with the same disease. Ryder’s mom said there was no way she was going to go home and just wait for her son to die. She joined the National MPS society and the Cure Sanfilipino Foundation.
Now 3-years old, Ryder’s development and verbal skills have already been delayed by the disease. Sanfilippo has left Ryder with mild to moderate hearing loss and a vision impairment. Ryder’s parents know as the disease progresses it will take more of his abilities, skills, and his mind. The disease will ultimately leave Ryder in a vegetative state, similar to a Pediatric type of Alzheimer’s.
Ryder’s mom says the reality of the disease sinks in when you compare Ryder’s development to that of his siblings. During a typical snack time Ryder’s twin sister, Vera and his younger sister Tessa, who is 11 months younger than him can both ask for what they want and tell her if they like their snack. They can both take their snack to the table themselves and eat their snacks. Ryder needs assistance in eating and getting to the table. Ryder’s mom says “this disease takes away skills that so many take for granted.”
Ryder Make a Wish
In October of 2016, Ryder was granted a Make-A-Wish. Ryder chose a permanent playground structure and a party instead of taking a trip. His parents said he likes to be at home unless he is going to visit his Nana and Papa or his Grammy and Grampa. Ryder’s party started with Pizza and cake and the kids all got to run around and play on the new playground.
Ryder with Firetruck
As part of the Make-A-Wish, The Sedro-Woolley Fire Department brought a fire engine out for the kids to explore and Skagit County Medic One brought out an ambulance. The kids got to listen to the sirens and go for a ride. The firefighters surprised all the kids with coloring books and crayons and brought Ryder his very own peddle Firetruck with a bell, hose and ladder. They let the kids dress up in bunker gear and take photos.
There is hope to fight this disease. Researchers at Nationwide Children’s Hospital have discovered a breakthrough gene therapy treatment that can hopefully stop this disease one day. Ryder’s mom continues to push for awareness and to help raise funds to further this critical research. She hopes to save her son’s life and the lives of children she has never met. She says, The key to the Cure is Funds and we cannot do it without the help of the community. She said, “we fight day to day for our child. We want to one day have a cure, but we can’t do this without a voice. Being rare is much like being silent, it is unheard of and nobody knows what it is. We need social media and the news to be involved in helping us show the world that our children do exist. Their disease is fatal before they hit their teenage years, but it’s not just that simple. Their poor bodies and mind suffer long before their final days.” Ryder’s mom has set up multiple different ways for people to donate and spread the word about Sanfilippo. All donations collected go to helping children with Sanfilippo with their research for treatments and a cure. We have listed some of the fundraisers and a link to the Go Fund Me page below:
www.Facebook.com/CureRyder/Shop Cure Ryder Items: t-shirts, sweatshirts, pillows, key-chains, etc. All Profits go to the cure Sanfilippo Foundation, a 501(c)3 nonprofit.
As of November 2nd, 2016, Ryder was preparing for a Natural History Study with Biomarin in Oakland, California. He must first pass an IQ test to qualify for the study. During the study he will not be given any investigational drug therapy but Biomarin is hoping that in twelve months they will be starting a Enzyme Replacement Therapy Study. Children who participate in the Natural History Study will be able to automatically qualify for the weekly Enzyme Replacement Therapy trial.
There is so much more to Ryder’s Story, we’ve only barely scratched the surface. Please visit his webpage for additional information and to read more on his story and the stories of multiple other children who are fighting this disease. The link is here: www.CureRyder.tumblr.com
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