EDMONTON – A family of six in Evansburg, Alta. Are devastated after discovering that three of their four children suffer from a rare and terminal illness.
Katie and Jacob Lamprecht told CTV News Edmonton that their children Hannah, 8, Kiara, 10, and AJ, 5, have all been diagnosed with Batten disease, a disease of the nervous system that deteriorates both mind and body, less than a year apart.
In January 2020, Hannah’s teacher noticed that she was having trouble reading the whiteboard in class, Katie said. After several visits to the optometrist, Hannah was initially diagnosed with Stargardt’s disease, a disease related to vision loss. To confirm this diagnosis, the specialist performed genetic follow-up.
On October 14, 2020, they learned that Hannah was actually suffering from juvenile Batten disease.
About a month later, Kiara was diagnosed with the same disease. Then, in June of this year, the unthinkable happenedâ¦ AJ was also diagnosed with Batten.
The Lamprechts said Hannah and Kiara were from a previous marriage, but AJ was not. They have another son, Drake, 13, but he has a different biological father than his siblings and does not have Batten.
Batten disease occurs when both parents have the same deleted or defective CLN3 gene, and the odds of three parents having the same genetic defect is about one in eight billion, according to Katie and Jacob.
There is only one other confirmed case of Batten in Alberta and only 5,000 reported cases worldwide. The genetic disease affects less than one in 100,000 children.
“When they gave us that diagnosis and she started listing the symptoms, such as vision loss, seizures and dementia, then when she said she was limiting her lifeâ¦ I think it is. at that point our world fell apart, âKatie explained. âWe fell to our knees. “
âWe just started to cry,â recalls Jacob.
There is no cure for Batten’s disease and it progresses quickly. Most children with Batten die between the ages of 15 and 30, according to the National Institute of Neurological and Stroke.
However, Jacob said he was grateful that he was surprised from the early stages for his three children.
“We appreciate having the time,” he said. “These kids can never drive, they can never ride a bicycle.”
âThey look normal,â Katie added. “But we know what’s going on inside.”
Jacob and Katie said they spend eight to ten hours a week going to doctor’s appointments, but eventually the children will need 24/7 care.
âIt’s in your mind as soon as you open your eyes in the morning,â Katie said.
âAnd the last thing when you go to bed,â Jacob added.
The children know they are sick, but the parents have chosen not to tell them about the official diagnosis.
âI don’t want to break them,â Jacob said.
Every night before bed, the parents said that they all prayed together as a family.
âWe are praying for a miracle,â said Jacob.
“They asked God to fix their eyes, which is heartbreaking.”
Clinical trials and treatments are available in the United States, but it costs $ 1.75 million per child to participate.
Jacob and Katie said they were unsure of their next steps, but they are fundraising through a GoFundMe page in hopes of supporting a medical breakthrough for their three children.
âThere’s no cure for this,â Jacob said. “And that’s the reality we face every day.”
âWe’re going to find the money and get them through one by one. “
Katie said the kids have been approved for Make-A-Wish, they’re just deciding what their wish will be.
With files from CTV News Edmonton’s Ryan Harding