A Spokane Valley family dealing with devastating diagnoses for two of their little boys has been dealt even more health challenges.
4 News Now featured the Tucker family in an article 2 years ago. Michael was just 6 years old, and Oliver was almost 2 when we met them in 2023. The following day, they were scheduled to undergo surgery in Seattle.
Surgeons inserted a chest port and a shunt in each of the boys’ heads, with a cord that goes back up to it. They get infusions in the port every other week. The hope is that medicine will slow the rare, incurable disease, CLN2 (Batten Disease). It affects about 3 in every 100-thousand children.
Batten Disease causes seizures, loss of motor skills, speech and eyesight, childhood dementia, and eventually death. Many children with Batten’s don’t live to adulthood.
Either Kristian or Bryden Tucker drives their sons to Seattle every other Sunday, regardless of the road conditions. They stay overnight in a hotel since treatment starts early the next morning. Travel for treatment is expensive, causing wear and tear on their vehicle.
Recently, 85 different people nominated the couple to win a van from Camp Chevrolet and local Lithia dealers. Last month, they won the van!
“It just makes a big difference in our lives,” says Bryden of the support. He says they need it now more than ever, as they face more challenges. Kristian was diagnosed with Multiple Sclerosis and on the same day Kristian’s dad died last year, their little girl started having seizures.
Talia, age 7, sees doctors in Spokane and Seattle. While she is a carrier of Batten Disease, doctors say her seizures are epileptic and not related to Batten. The family hopes for a referral to a specialist team in California for possible brain surgery.
The Tuckers hope and pray for help, a cure for Batten Disease, and more time with their children.
“I just want to see them grow up,” said Kristian.
If you want to help, the family has a GoFundMe to help with mounting medical and travel expenses.
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