Oldest Living Person with Rare Disease Gives Hope To Four-Year-Old

Wendy Nelson meets three-year-old Paetyn Harpstead, who also has ataxia telangiectasia

WEST FARGO, N.D. — For 44 years, Wendy Nelson has battled ataxia telangiectasia (A-T), an illness that affects only 500 people across the country.

Wendy has also survived breast cancer, and her strength provides hope to her family, including Pam Digby.

“It’s very inspirational for the parents. If you’re a young parent in your twenties and you’ve just been told that your child has a life threatening disease and they might not live past their teens or twenties, to see Wendy at 44 is such an inspiration,” said Digby.

Meanwhile, in Morris, Paetyn Harpstead is at the beginning of her fight with A–T.

Just days away from turning four, Paetyn’s upbeat personality inspires everyone who meets her, including Wendy.

“She wants to make sure everyone around her is happy. She always likes to go over and give people hugs and smiles and likes to make them feel like they’re a part of her world,” said Amber Harpstead, Paeytn’s mother.

Most A–T patients are confined to a wheelchair by the age of ten, and are at a greater risk to cancer and respiratory ailments.

But even with a tough road ahead, Amber will not give up hope for her daughter.

“She’s the light of all of our lives, there’s not much that she can’t do. She’s an inspiration to all of us,” said Harpstead.

Digby decided that this year’s Insane Inflatable 5K in West Fargo was the perfect opportunity for Wendy and Paetyn to meet for the first time.

“It’s really pretty neat because Paetyn’s gonna be four and Wendy’s 44, so what an amazing span, and I wanted Wendy to offer hope to Paetyn’s family,” said Digby.

And then it was all smiles once the two met for the first time.

Bringing these two together through the AT Children’s Project, Digby knows it’s a long path until all AT patients can be cured.

“We have what we believe is a cure, we have to fund it. We are hoping to fund for the first child this year, it’s going to take $1.8 million, that’s a lot of bake sales. So we’re doing everything we can. We have races, runs, things all over the United States,” said Digby.

For more information about how to help the A–T Children’s Project, click here.