Online auction to help local boy with rare disorder

STATE CENTER – A local teenager is asking the community to help him and others suffering from a rare genetic disorder by bidding in an online auction.

Sam Wilkinson, 13, is a seventh grade student at West Marshall Middle School who has cavernous angiomas, a disorder that causes slow blood flow to vessels in the brain and spine.

Four years ago Wilkinson discovered he had the disease when he woke up with a severe headache, vomiting and numbness on his left side. He couldn’t walk, sit up and turn his head without throwing up. He was diagnosed with bleeding cavernous in his brain stem, then was taken to Mayo Clinic for surgery.

“He’s come a long way,” said Michelle Wilkinson, Sam’s mother. “It significantly disrupted his life and the whole family’s life. Now fatigue is still a problem because of his brain injury. He gets tired easily and that’s just no fun for anybody.”

He has another cavernous angiomas in his spinal cord, because of it, he cannot do his favorite activities.

“He can’t wrestle or play football anymore,” Michelle said. “Because of where it’s located he could end up paralyzed and not even be able to breathe if it has a significant bleeding.”

Michelle is a moderator for the Angioma Alliance Rare Disease Day Auction. The online auction will help Sam and other people across the country with the disorder.

“It’s a fundraiser for research,” Michelle said. “Angiomas has been really huge in moving research forward. They think that within the next two years, if they have enough money, they will be able to start human trials. They have had studies on animals with this medication and it seems to drastically improve the risk of bleeding.”

After human trials, Michelle hopes there will be a medication available.

“If there is a medication that would be so much better than surgery or just waiting and hoping he won’t get worse and worse before he can do surgery,” Michelle said.

Sam also hopes for medication to help him.

“If they come up with medication I hope that I could do contact sports again,” Sam said. “It would be awesome.”

The online auction, features a painter, Catherine Noble, of State Center, who will paint-to-order a portrait of the bidder’s pet, in addition to dozens of other items.

“There are a lot of different items up for bid from all over the country,” Michelle said. “There is art, cookies, wine, all kinds of things up.”

The auction will be open until Friday.