Regina family staying positive during treatment for son’s rare brain disease
REGINA -- After their son’s diagnosis with a rare disease, a Regina family is doing all they can to keep a smile on his face throughout the extensive treatment process.
Theo Stumph was diagnosed with a degenerative brain disease called CLN2 or Batten Disease eight months ago, making it hard for him to do day to day activities.
“He obviously has difficulty in his mobility and his speech, so the biggest challenge for us is trying to figure out what he wants,” said Mike Stumph, Theo’s father.
However, there have been some positives through his many treatments. Since starting bi-weekly enzyme treatments, Theo's doctors say they are confident it is helping. He usually has one seizure per week, but he recently went 48 days without one.
Theo is the only person in Saskatchewan with the rare disease so travelling for doctors’ appointments is quite common. The Stumph family has travelled to Ohio to meet with North America’s leading Doctor in Batten Disease.
Next, they will be taking a trip to British Columbia for photobiomodulation therapy.
“Which we are hoping might have some success in repairing degeneration to his eyes,” said Heather Leask, Theo’s mother.
Along with bi-weekly trips to Saskatoon for enzyme treatments, the costs have been adding up for the family. Friends and family have been helping by organizing fundraisers, including a GoFundMe page called “Theo’s Challenge.”
"We’re very appreciative to people's generosity that can help us with that, in hopes that it will help Theo," said Leask.
Along with raising money, the family is also looking to raise awareness about Batten Disease and other rare conditions, in hopes of someday to finding a cure.