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Woman organizes ‘Take a Step for an Angel’

For nine years, Missy Blanford has been seeking answers about her 14-year-old son Ryan’s neurological disorder, but the lack of definitive tests left her with many questions.

Now, the Potosi woman has organized “Take a Step for an Angel” to raise funds for Angelman Syndrome research and more conclusive testing. The event, which includes a 5K race and a one-mile walk, begins at 8 a.m. May 7 at John Evans Middle School parking lot. Participants compete for a flat fee, and may register beforehand or at 7 a.m. the day of the event.

Blanford and her husband, Doug, noticed soon after their older son Ryan was born that something wasn’t quite right. As a baby, Ryan couldn’t crawl straight, and as a toddler, he had great difficulty walking. He also suffered seizures – up to 80 per day. Doctors diagnosed him as “developmentally delayed.”

Although he eventually started walking at 18 months, Ryan’s behavior remained unusual. “Developmentally disabled” no longer covered Ryan’s problems.

“He wouldn’t play with toys,” Blanford recalled recently as Ryan napped in the family’s hillside home. “He would turn his Tonka toys over and just spin the wheels. If we turned it upright, showed him how to play with it and made truck noises, he’d just turn it over again and keep spinning the wheels.”

Ryan also demonstrated an obsessive love of water. Unable to speak coherently, he would jump up and down excitedly when he saw a fountain or other water, and sat enthralled as long as his parents would allow. They have had to remove kitchen and bathroom faucet handles to keep him from turning on the water and flooding the floor.

At one point, doctors theorized that Ryan had autism, but that theory failed to return a diagnosis, Blanford said.

“He had some of the symptoms, but he was too social to be considered autistic,” she explained. “Later, they did some tests to see if he had the chromosome defect associated with Angelman Syndrome, but all the tests were negative.”

Once again, the Blanfords were left seeking answers.

Although doctors could find no scientific evidence, last year they finally decided to clinically diagnose Ryan with Angelman Syndrome because his behaviors were symptomatic of the disorder.

Dr. Harry Angelman, an English physician, first diagnosed the neurological syndrome in 1965. He had as patients three children who could not speak and who exhibited a stiff and jerky gait, excessive laughter, and seizures. The first reports of the syndrome in North America came in the early 1980s. The condition primarily occurs in Caucasians and affects an estimated 1 in 15,000 to 1 in 30,000 children. It is usually caused by a deletion of part of one chromosome.

Other symptoms may include excessive drooling, obsession with water, happy and excitable demeanor, short attention span, and disproportionate head circumference. Children with Angelman’s frequently understand much of what they hear, but are unable to respond verbally.

“Ryan can say 10 to 15 words that a stranger could recognize, and he knows about 10 words in sign language,” Blanford said. “He uses what we call ‘Ryan language’ but you really have to be close to him to know what he wants.”

Thanks to First Steps and Parents as Teachers, the Blanfords were able to work with their young son to improve his progress. He attended public school until recently, when the school no longer was able to meet his needs. Ryan currently attends Citadel State School for the Severely Disabled.

Through the early years of Ryan’s life, Missy Blanford maintained a constant quest for answers. She searched the Internet for information and sought out support groups online. If her son was not going to be like other children, she needed to know exactly what was wrong.

“I was looking under every rock to find a positive diagnosis of something,” she said.

Living with a child who needed 24 hour a day supervision was a strain on the family. Missy and Doug divorced, then later remarried. Love has kept the family going, and learning to adjust has made them strong, Missy Blanford said. Ryan’s younger brother Cody has been a great help and is a wonderful brother, she added.

“I finally got to the point of accepting Ryan’s handicap,” Blanford said. “He will have to have 24-hour care the rest of his life. But I can’t imagine him being anywhere but here.”

Blanford hopes the May 7 fundraiser will help educate people about the neurological disorder. All money raised that day will go to the Angelman Syndrome Foundation. Several area businesses and schools have donated materials for the event and raised money that will be included in the final donation to the foundation.

Thus far, Blanford has received approximately $800. Her goal is to raise at least another $200 from the race/walk. Donations will be accepted from those who do not wish to complete in either event.

Cost to participate is $18 for the 5K run and $13 for the walk. The total for a family of four or more is $33. The first 50 registrants will receive a shirt.

The top three winners in each age group will win an award. The groups are 17 and under, 18-29, 30-39, 40-49, 50-59 and 60 and up. Strollers and joggers are welcome and refreshments will be available. The event will be held, rain or shine.

For more information on “Take a Step for an Angel” or Angelman’s Syndrome, call Blanford at 438-5735.

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