'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
Several flight attendants from Pakistan have gone missing after landing in Canada
Multiple flight attendants from Pakistan International Airlines have abandoned their jobs and are believed to have sought asylum in Canada in the past year and a half, a spokesperson for the government-owned airline says.
BREAKING Ottawa public school board, 3 Toronto-area school boards launch lawsuit against social media giants
The Ottawa-Carleton District School Board and three school boards in the Toronto-area have launched legal action against social media giants, accusing them of "disrupting students' fundamental right to education."
Rainfall warnings of up to 90 mm among weather alerts in effect for 7 provinces
Rainfall warnings of up to 90 millimetres, air quality advisories and other alerts have been issued for seven Canadian provinces, according to the latest forecasts.
Tipping is off the table at this Toronto restaurant
A Toronto restaurant introduced a surprising new rule that reduced the cost of a meal and raised the salaries of staff.
A Nigerian woman reviewed some tomato puree online. Now she faces jail
A Nigerian woman who wrote an online review of a can of tomato puree is facing imprisonment after its manufacturer accused her of making a “malicious allegation” that damaged its business.
Donald Trump assails judge and his daughter after gag order in N.Y. hush-money criminal case
Donald Trump lashed out Wednesday at the New York judge who put him under a gag order that bars him from commenting publicly about witnesses, prosecutors, court staff and jurors in his upcoming hush-money criminal trial.
A fight to protect the dignity of Michelangelo's David raises questions about freedom of expression
Michelangelo's David has been a towering figure in Italian culture since its completion in 1504. But in the current era of the quick buck, curators worry the marble statue's religious and political significance is being diminished.
Doctors visiting a Gaza hospital are stunned by the war's toll on Palestinian children
An international team of doctors visiting a hospital in central Gaza was prepared for the worst. But the gruesome impact Israel’s war against Hamas is having on Palestinian children still left them stunned.
China's latest EV is a 'connected' car from smart phone and electronics maker Xiaomi
Xiaomi, a well-known maker of smart consumer electronics in China, is joining the country's booming but crowded market for electric cars.