May 10th, 2012
Ryan’s Hope Fundraising Event, Almost 5 Years Old, A syndrome so rare that only 13 children in the United States have been diagnosed, No Specialist in the U.S., Saturday, May 12th, Berlin, Maryland
I had the t.v. on. Just listening to the noise, really. Then, I heard them say something about this little boy who had been diagnosed with such a rare syndrome that only 13 children in the United States have it.
When they showed Ryan, he was smiling and looked like the happiest kid on earth. He will be 5 this summer. He has 2 other sisters.
This information I am giving you was taken from http://www.delmarvanow.com/article/20120429/news01/204290314/fundraiser-held-berlin-boy-raresyndrome. Click on it and meet Ryan.
He was born with Chromosome 4Q Deletion Syndrome, the deletion of a portion of the fourth chromosome. It is so rare. He does not speak, walk or crawl and his needs are those of a baby.
Chromosome syndrome features are low muscle tone, gastrointestinal reflux, hearing and vision problems, large head, small feet and short limbs compared to torso size, according to www.rareshare.org.
Little is known about the syndrome. There is no specialist in the U.S. The closest one, Dr. Eugene Strehle, is in England. Ryan’s parents would love to take him but the trip is too expensive.
Their insurance coverage denies many of Ryan’s everyday needs. Even getting his wheelchair was a fight.
From his parents:
“He is very definitely our little gift. I can’t imagine not having him in our lives. God gave us this special boy” his mother said, as her husband, standing beside her, finished her sentence. “And we accept it.”
How can you help? The first Ryan’s Hope Fundraiser is scheduled for May 12th from Noon until 9 p.m. at the American Legion located at 10111 Old Ocean City Rd., Berlin, MD 21811.
Ryan will be there with his family as guests enjoy a horseshoe tournament, disc jockey, silent auction, 50/50 raffle, bake sale, bingo and dinner at 4 p.m., catered by Em-ings Barbecue.
Tickets cost $10 for children and $25 for adults. The funds raised are for Ryan’s medical expenses fund. Call 443-880-8398 or 443-497-0636.
So, if we all thought we had a bad day at some point during the day….that was pretty insignificant, wasn’t it?
Talk to you later.
Tags: American Legion in Berlin, Berlin, Berlin Boy has rare Syndrome, Chromosome 4Q Deletion Syndrome, Maryland, rare syndrome, Ryan Drimal, Ryan's Hope Fundraiser
