Fort Mill Times

Rare genetic disease threatens wedding plans

A fundraiser will be held Sept. 10 at Empire Pizza in Fort Mill to benefit Deanna Aldrich, who is battling a rare genetic disease.
A fundraiser will be held Sept. 10 at Empire Pizza in Fort Mill to benefit Deanna Aldrich, who is battling a rare genetic disease.

A couple of months ago, Deanna Aldrich began losing feeling in her right arm and hand.

Doctors initially diagnosed her with carpal tunnel syndrome, so Aldrich returned to work at Mericlean, a cleaning service, wearing a brace she thought would help – but the problem persisted.

“Nothing was helping or getting any better – it was actually getting worse and moving into her shoulder – so she went back to the doctor,” said Kristin Malone, Aldrich’s fiend and the owner of Mericlean.

“They did an MRI and that’s where they discovered all of the tumors.”

Aldrich was diagnosed with Von Hippel-Lindau Syndrome, a rare genetic disease in which blood vessels knot together to form growths that press on nerves and brain tissue. The MRI revealed she had tumors throughout her body, including on her brain, eyes, pancreas and adrenal gland.

“They wanted to do surgery on the tumors on her brain, and now they’re saying she may not be able to walk again,” Malone said.

“When Deanna first got diagnosed it was sad. She had to have immediate surgery, so we had to drop everything and have her go do that. You know, she goes in thinking they are going to fix her and then she hears that, so you never know.”

Aldrich spent time in the hospital recovering from surgery. Doctors gave her an electric wheelchair, but she couldn’t leave the hospital until her house in Belmont, N.C., was equipped with ramps and her fiancé, Josh Brown, took classes to teach him how to assist her, including how to properly lift Aldrich out of her chair.

“It’s a complete life change for them,” Malone said. “She’s come a really, really long way, but still has a ways to go.”

Malone said many of Aldrich’s customers have texted, called and emailed her asking about Aldrich’s condition, so Malone figured she could do something to help them see her and help cover the mounting medical expenses. She organized a fundraiser and benefit at Empire Pizza in Fort Mill on Sept. 10 from noon to 4 p.m.

“I figure it’s a really cool way for them to get to come out and show support,” Malone said. “Deanna is going to be there with her fiancé and their 1-year-old, so everyone will have a chance to see her.”

There are two other events coming up as well. The first is 1 p.m. Sunday at The Rockhouse Tavern and Smokehouse in Gastonia, N.C. The event will be hosted by UFC fighter “Smilin” Sam Alvey. There will be raffles throughout the day and food and drinks will be served.

The third fundraiser is a community yard sale in Clover Meadows Sept. 24 that begins at 1 p.m. and includes a yard sale, children activities, food trucks, raffles and more.

Aside from raising money for covering mounting medical bills and rehab costs, Malone hopes to help Aldrich fulfill her ultimate goal: Aldrich and Brown’s wedding is planned for April 2017 and she has vowed to walk down the aisle.

“We joked with her that she’s going to do it (one way or another),” Malone said. “Even if we have to use her like a puppet on a strings or hook something up, we’d do it. She’s going to walk down the aisle.”

Want to go?

Empire Pizza in Fort Mill is hosting a fundraiser for Deanna Aldrich noon-4 p.m. on Sept. 10. Aldrich was diagnosed with Von Hippel-Lindau Syndrome, a rare genetic disease.

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