SAT . Five-Year-Old Chip Chambers Is His Parents’ Pride — Now They’re Facing a Diagnosis No Family Is Ready to Hear

He’s just 5 years old, and he is everything to them.

Chip Chambers of Pottsboro, Texas is sweet, loving, and full of life — the only child of Jacob and Kayla Chambers, and the miracle they waited years to hold.

“We haven’t talked to Chip about his disorder yet,” Kayla shared quietly. “We’re hoping a medication called Miglustat can help slow the progression.”

For years, Jacob and Kayla struggled to have children. Then, after 10 years of marriage, joy finally arrived.

“We found out in January 2020 that we were pregnant,” Kayla said. “We were over the moon.”

But early on, doctors discovered that both parents carried a gene that gave them a 25 percent chance of having a child with Batten Disease, a rare and devastating genetic disorder.

When Chip was born, he was tested — and the results came back negative.

They breathed a sigh of relief and believed the fear was behind them.

Then, last August, everything changed.

Jacob and Kayla began noticing issues with Chip’s vision. Losing eyesight is one of the early warning signs of Batten Disease, but when Chip was tested again, the results were once more negative.

Still, something didn’t feel right.

An eye specialist later raised concerns that Batten Disease might still be present. Another test was ordered.

That was when the family heard the words no parent ever wants to hear.

There is no cure for Batten Disease.

Batten Disease is a rare, inherited neurological condition where cells cannot properly clear waste, causing toxic buildup in the brain. Over time, it leads to progressive vision loss, seizures, cognitive decline, movement problems, and shortened lifespans.

“By the late teens or early twenties, most patients become bedridden and unable to function independently,” Kayla explained. “Most forms of Batten Disease are fatal.”

Still, Jacob and Kayla are holding on to hope.

There is a medication called Miglustat that may help slow the disease’s progression. But hope comes with a staggering cost.

“One prescription of Miglustat costs $28,000 where we live,” Kayla said. “I was able to buy the first month using a coupon, which brought it down to $7,000.”

Insurance coverage is uncertain, and the future remains unclear.

Today, Chip has already lost his central vision and can now see only peripherally. Kayla’s voice grows heavy as she talks about time — and how desperately she wishes she could slow it down.

Jacob and Kayla are taking life one day at a time, praying that medical advancements, new treatments, or even a cure will arrive before their little boy reaches his teenage years.

For now, Chip is still a joyful 5-year-old — loved fiercely, protected endlessly, and cherished in every moment.

Please keep this sweet family in your thoughts and prayers. 💛