After daughter’s devastating Batten diagnosis, Minnesota family fighting to find cure

WCCO, FAMILY HANDOUT, CNN

By BERET LEONE

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    VICTORIA, Minnesota (WCCO) — A Victoria, Minnesota, family is channeling their heartbreak into hope.

When Dan and Stephanie Born welcomed their daughter Helen into the world, they felt their family was finally complete. Helen Born was spirited from the start and has always loved pink, hugs and all things “girl.”

Now, that spirit is helping Helen Born — and her parents — fight an unimaginable disease.

“It’s been a really, really difficult year,” Stephanie Born said.

It was around age 2 that Dan and Steph Born started to notice some changes. Helen Born was a bit clumsy, and her speech was delayed. Last summer, the seizures started. By age 4, doctors delivered a diagnosis the Born family had never heard of: CLN2 Batten disease — a rare, degenerative and fatal neurological disorder with no cure.

“We never thought our world would come crashing down with a diagnosis,” Dan Born said. “You could just see it in the doctor’s eyes.”

Batten disease affects just 200 to 300 children in the U.S. It’s caused by a deficiency of the TPP1 enzyme, which breaks down waste in cells. Without it, the waste builds up and slowly kills cells, taking away motor function, sight, speech and, ultimately, life. Doctors told the Borns their daughter may not live past the age of 10.

“I can’t unhear that,” Dan Born said. “And I can’t live with that.”

Since her diagnosis, Helen Born has been receiving enzyme replacement therapy every two weeks at Mayo Clinic — the only child there currently undergoing the treatment. Shortly after the diagnosis, a port was surgically placed in her brain to administer the infusions, which aim to slow the disease’s progression. But the treatment is not a cure.

“This is the best she’ll ever be until we find something else,” Stephanie Born said. “It’s a disease that absolutely robs kids of their childhood.”

The Borns refused to accept that Helen’s diagnosis is the end of her story.

“The first night after the diagnosis, there was just this beautiful, pink sky,” Dan Born remembered. “Helen has always loved pink. I remember Steph, one of the first nights, said, ‘That’s a sign from God that he’s going to take care of Helen.'”

That moment inspired the creation of Helen’s Pink Sky Foundation — a nonprofit dedicated to raising money for Batten disease research. In just a few months, they’ve raised $1 million. None of it goes toward Helen Born’s medical care. Every dollar supports research grants, with three institutions already receiving funding.

Their goal: raise another $8 to $10 million over the next three years.

“We are just getting started,” Stephanie Born said. “I think we’re challenging things in certain ways that people haven’t seen before. That we’re going to get a different outcome. I will think nothing less than us finding a cure.”

The foundation has sparked nationwide support. Hundreds of people across the U.S. are hosting “Pink Lemonade Stands for Helen.” During the Indy 500, where Helen Born’s cousin and uncle are part of a race team, her story was featured — drawing 10,000 views to the foundation’s website in a single minute.

The momentum is vital. And in the face of this relentless disease, their fight burns brighter than ever.

“We’re fighting every day for Helen,” Dan Born said. “And we’re going to continue to fight for Helen. We can’t accept anything else.”

Helen’s Pink Sky Foundation is hosting a fundraising gala Oct. 25 at Hazeltine National in Chaska, Minnesota.

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