August 15, 2018
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Maine kids raise money for cousin with rare genetic disorder

By Alexa Maslowski, CBS 13
Updated:

A few kids in Falmouth are making a difference with their neighborhood lemonade stand.

Patrick and Max McCrann — ages 8 and 5 — set up a lemonade stand with friends Jon and Peter Kearns, ages 8 and 10. But the money they raise won’t be for them.

“We all wanted to help the foundation and raise money for it,” said Peter Kearns. They are raising money for their 8-year-old cousin and family friend, Tess Bigelow, who has a rare genetic mutation: USP7.

“When she was born … we kind of sensed that something may be a little bit different about her and over time it became undeniable,” said Bo Bigelow, Tess’ father.

Tess cannot speak and has a developmental delay. Bo and his wife, Kate, brought their daughter to a geneticist after no doctors could figure out what the source of her medical problems were.

“It’s pretty isolating when you are pretty sure that you’re the only case in the world,” said Bo.

The Bigelow’s would scour the internet, looking for answers, for others with the rare mutation, for hope.

Then it came.

“I got an email from this guy at this lab in Texas, in Houston and he worked in this lab at Baylor college of medicine,” said Bo.

The man was doing research on the USP7 gene — and knew of other patients. At the time, Tess was only the 8th patient in the world. Now, there are 34.

“Finding that tribe and connecting with other patients was really huge for us,” said Bo. At the suggestion of the researchers, the Bigelows started a nonprofit, the USP7 Foundation. At this point their goal is to find a total of 100 patients and to raise $180,000. Before the lemonade stand, they had raised $100,000.

“There’s some suggestion at least that some of the stuff might be reversible, we might be able to develop a treatment within Tess’ lifetime,” he said.

The McCrann and Kearns kids have done lemonade stands for charitable organizations before, in fact — their efforts got the attention of the organization Nextdoor. Nextdoor chose 10 lemonade stands across the country and promised to double their earnings. Sunday’s lemonade stand was one of those 10.

“What these guys are doing today with the stand. it just gets me right here; you know?” Bo said, pointing to his heart. Sunday the kids raised $596.50 — and with Nextdoor matching it, the donation goes up to $1,193.00.

Right now, the USP7 Foundation is working on sending all known patients with a USP7 mutation or deletion to Baylor College of Medicine for research.

For more information or to donate to the foundation, you can go to usp7.org.

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