Lombard family hopes to 'strike out' disease with bowling fundraiser (with video)

LOMBARD – Coming to terms with the fact that her 5-year-old daughter could be in a wheelchair in a few years has been devastating for Lombard resident Heather Pate, whose daughter Tessa has Charcot-Marie-Tooth disease.

“The hardest thing as a parent is that you can’t do anything about it,” she said. “Every parent wants to fix what’s wrong with their child or trade places with them. But she’s only going to get worse.”

CMT is a degenerative nerve disease that can rob its victims of the ability to walk or use the muscles in their hands. There is no cure or treatment. It affects about one in 2,500 people in the United States and more than 2.5 million people worldwide have it, yet not many are familiar with it, said Jay Pate, Tessa’s father. He said she has type 2A, which is more aggressive.

“We realize this is what we have, and what we’re dealing with, and we’re going to do everything in our power to help her. That’s all we can do,” Heather said.

The family is doing its part to help by hosting a benefit for the CMT Association from noon to 3 p.m. Sunday at Lombard’s Lucky Strike Lanes. The cost for bowling, shoe rental and food is $40 for adults and $15 for kids. All the proceeds go directly to the association to fund research for treatment and a cure.

CMT research does not receive funding from the government, Jay said.

“We’re out to bring awareness,” he said. “We need money for research, and we’re trying to get more and more people involved. We need to let people know it’s here, it’s serious, and we’re looking for help.”

Heather said she’s very hopeful there will be treatment or a cure in Tessa’s lifetime. There’s a trial for a promising drug that should be available in about four years, she said.

Tessa was diagnosed with CMT at age 3. Jay said they knew something was wrong by the way Tessa walked.

“She had an abnormal gait, and we sensed it wasn’t developing properly,” he said.

The family saw a doctor at Lurie Children’s Hospital in Chicago who recognized Tessa’s symptoms and ordered the genetic testing that confirmed the CMT diagnosis.

“Doctors say she’s progressing rapidly and could be in a wheelchair by age 9,” Jay said. “Her fingers are already starting to curl, and she won’t have good range of motion in her hands.”

Jay said Tessa can still walk with the help of leg braces and does physical therapy and horseback riding to strengthen her calf muscles. He believes she’ll live a “productive life,” but describes her condition as “very sad.”

“It’s a nasty disease, but she’s still very positive. She knows she has it, and her friends know she has it,” he said.

This is the first time the family has gotten involved with a fundraiser like the one on Sunday, Heather said. It’s taken a long time for her to get to the “point of being ready to do something.”

“It’s been hard to accept help,” she said. “I’m the one helping others, so it’s strange being on the receiving end. I feel a little guilty; people work so hard for their money, and then they turn around and give it to help Tessa. We have amazing neighbors, family and support.”

Mary O’Brien, a neighbor of the Pate family, said she’ll be at Sunday’s event to support the family and she's happy to help “shed light” on the disease.

“Tessa will change the face of CMT,” O’Brien said. “I hope this brings awareness and contributions for research because it’s underfunded. We’re thrilled to fight for Tessa.”

Heather thinks having Tessa see all the friends and family who come to support her will be a great experience, and Tessa herself said she can’t wait for Sunday. The 5-year-old said bowling makes her happy.

“I’m excited to bowl because it’s my favorite sport, and I hope I get a strike,” she said.

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If you go

What: Strike Out CMT fundraiser

When: Noon to 3 p.m. Sunday

Where: Lucky Strike Lombard, 100 Yorktown Shopping Center

Cost: $40 adults, $15 kids

More info: cmtausa.org/luckystrike

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Know more

The Pate family provides updates on Tessa on the Facebook page “Cure My Tessa."