'We're praying for a miracle': 3 Alberta siblings diagnosed with rare, terminal disease
A family of six from Evansburg, Alta., is devastated after finding out three of their four children have a rare, terminal disease.
Katie and Jacob Lamprecht told CTV News Edmonton their children Hannah, 8, Kiara, 10 and AJ, 5, were all diagnosed with Batten disease, a nervous system condition which deteriorates both the mind and body, within a year from each other.
In January 2020, Hannah’s teacher noticed she was having troubles reading the whiteboard in class, Katie said. After multiple trips to the optometrist Hannah was originally diagnosed with Stargardt disease, a vision loss illness. To confirm that diagnosis, the specialist followed up with genetic testing.
On Oct. 14, 2020, they received the news that Hannah actually had juvenile Batten disease.
About a month later, Kiara was diagnosed with the same disease. Then in June of this year, the unthinkable happened…AJ was also diagnosed with Batten.
The Lamprechts said Hannah and Kiara are from a previous marriage but AJ is not. They have another son, 13-year-old Drake, 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 with the same genetic abnormality are about one in eight billion, according to Katie and Jacob.
There’s only one other confirmed case of Batten in Alberta and only 5,000 reported cases worldwide. The genetic disease affects less than one in every 100,000 children.
“When they gave us that diagnosis and she started listing off the symptoms, such as the vision loss, seizures, and dementia and then when she said life-limiting… I think that’s when our world came crashing down,” Katie explained. “We fell to our knees.”
“We just started crying,” Jacob recalled.
There is no cure for Batten 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’s grateful it was caught in the early stages for all three of his children.
“We appreciate that we have time,” he said. “These kids can never drive, they can never ride a bike.”
“They seem normal,” Katie added. “But we know what’s happening inside.”
Jacob and Katie said they spend eight to 10 hours per week going to doctor’s appointments but eventually the kids will need 24/7 care.
“It’s on your mind as soon as you open your eyes in the morning,” Katie said.
“And the last thing when you go to bed,” Jacob added.
The children know they're ill, but the parents have chosen to not tell them about the official diagnosis.
“I don’t want to break them,” Jacob said.
Every night before bed, the parents said they pray all together as a family.
“We’re praying for a miracle,” Jacob said.
“They’ve asked about asking 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 take part.
Jacob and Katie said they’re unsure of what their next steps are, but they’re raising funds through a GoFundMe page in the hopes of supporting a medical break through for their three children.
“There’s no cure for this,” Jacob said. “And that is the reality we face every day.”
“We’ll find the money and put them through one at a time.”
Katie said the kids have been approved for Make-A-Wish, they’re just in the process of deciding what their wish will be.
With files from CTV News Edmonton's Ryan Harding
CTVNews.ca Top Stories
Widow looking for answers after Quebec man dies in Texas Ironman competition
The widow of a Quebec man who died competing in an Ironman competition is looking for answers.
Tom Mulcair: Park littered with trash after 'pilot project' is perfect symbol of Trudeau governance
Former NDP leader Tom Mulcair says that what's happening now in a trash-littered federal park in Quebec is a perfect metaphor for how the Trudeau government runs things.
World seeing near breakdown of international law amid wars in Gaza and Ukraine, Amnesty says
The world is seeing a near breakdown of international law amid flagrant rule-breaking in Gaza and Ukraine, multiplying armed conflicts, the rise of authoritarianism and huge rights violations in Sudan, Ethiopia and Myanmar, Amnesty International warned Wednesday as it published its annual report.
Photographer alleges he was forced to watch Megan Thee Stallion have sex and was unfairly fired
A photographer who worked for Megan Thee Stallion said in a lawsuit filed Tuesday that he was forced to watch her have sex, was unfairly fired soon after and was abused as her employee.
Amid concerns over 'collateral damage' Trudeau, Freeland defend capital gains tax change
Facing pushback from physicians and businesspeople over the coming increase to the capital gains inclusion rate, Prime Minister Justin Trudeau and his deputy Chrystia Freeland are standing by their plan to target Canada's highest earners.
U.S. Senate passes bill forcing TikTok's parent company to sell or face ban, sends to Biden for signature
The Senate passed legislation Tuesday that would force TikTok's China-based parent company to sell the social media platform under the threat of a ban, a contentious move by U.S. lawmakers that's expected to face legal challenges.
Wildfire southwest of Peace River spurs evacuation order
People living near a wildfire burning about 15 kilometres southwest of Peace River are being told to evacuate their homes.
U.S. Senate overwhelmingly passes aid for Ukraine, Israel and Taiwan with big bipartisan vote
The U.S. Senate has passed US$95 billion in war aid to Ukraine, Israel and Taiwan, sending the legislation to President Joe Biden after months of delays and contentious debate over how involved the United States should be in foreign wars.
'My stomach dropped': Winnipeg man speaks out after being criminally harassed following single online date
A Winnipeg man said a single date gone wrong led to years of criminal harassment, false arrests, stress and depression.