'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
Edmonton Top Stories
CTVNews.ca Top Stories
While Canadians didn’t have to wait too long on election night to find out who will lead the next government, there are still some individual seats too close to call.
While the People's Party of Canada did not manage to gain any seats this federal election, its accruing of the popular vote has experts saying the rise of the far-right populist party cannot be ignored.
Former Liberal candidate dropped from party amid controversy says he'll sit as MP after winning Toronto riding
The former Liberal candidate elected in Spadina- Fort York has confirmed he intends to represent the riding in Ottawa despite calls for him to step aside after a past allegation of sexual assault came to light.
Sherbrooke police is looking for a suspect who allegedly assaulted a nurse in a pharmacy.
Hundreds of thousands of white flags covering 80,000 square metres of the National Mall in Washington, D.C., have been planted in memory of the lives lost to COVID-19 in the U.S..
Croatian police said Wednesday they have established the identity of a woman who was found in a remote area on a northern Adriatic island with no recollection of who she was or where she came from.
FBI asks for the public's help in finding Gabby Petito's fiance as new tip emerges about his previous movements
The FBI is asking for the public's help in finding Gabby Petito's fiance Brian Laundrie after a coroner made an initial determination that Petito died by homicide.
Pubs and restaurants say they've been left to take the brunt of the backlash for the province's vaccine passport program, including threats and abuse from would-be guests.
An 18-year-old woman became the youngest Albertan to die of COVID-19, the province announced Wednesday which one Calgary physician said was because of the province's lacklustre COVID-19 policies in schools.
‘We’re not playing to our full potential’: Hilltops hope to turn things around after rare back-to-back losses
Despite losing back to back games, Saskatoon Hilltops head coach Tom Sargeant said it’s no time to panic.
A Saskatchewan doctor is speaking out following Premier Scott Moe's suggestion that medical professionals "really provide some guidance for Saskatchewan people" to help dispel COVID-19 misinformation.
The province of Saskatchewan reported 426 new cases of COVID-19 on Wednesday, with 25 per cent of cases reported in children under 12.
The Saskatchewan NDP says it’s time for the province to consider asking the Canadian military for help as COVID-19 hospitalizations continue to rise.
Briercrest College in Caronport reported a total of 71 COVID-19 cases have been confirmed as of Monday, including 62 active.
Steve Murphy, a legendary and trusted voice for news in Atlantic Canada, announced during this evening’s broadcast of CTV NEWS AT SIX his decision to step aside from his role as CTV News Atlantic’s Executive News Editor and Chief Anchor for the flagship news program.
Health officials in New Brunswick are reporting 75 new cases of COVID-19 on Wednesday, along with 27 recoveries, as the number of active cases in the province rises to 557.
Health officials in Nova Scotia are reporting 19 new cases of COVID-19 on Wednesday, along with 29 recoveries, as the number of active cases in the province drops to 127.
British Columbia health officials are facing mounting criticism and questions in the wake of a CTV News story exposing their practice of only publicly reporting the number of COVID-19 patients in hospital who are infectious.
A Surrey, B.C., woman whose 10-year-old son contracted COVID-19 says it took days for his classmates' families to be notified by public health.
On the eve of training camp, Canucks general manager Jim Benning said the organization will be fully vaccinated by the time Vancouver opens the regular season on Oct. 13.
Two days after the polling stations closed across Canada, Sault Ste. Marie was finally able to announce its winner.
From more placement opportunities to the development of a leadership academy, students at Cambrian College have the ability to add more to their resumes before hitting the workforce.
Sudbury Mayor Brian Bigger gave his first state-of-the-city address Wednesday in more than two years to a virtual crowd over the lunch hour.
UPDATED | Recount anticipated after Conservative incumbent Marty Morantz snags re-election by 24 votes
Candidates in the Charleswood-St. James-Assiniboia-Headingley riding are anticipating a judicial recount, after Marty Morantz of the Conservative Party of Canada snagged re-election with just 24 votes over Liberal candidate Doug Eyolfson.
Manitoba RCMP are searching for information in a violent attack in Norway House after a boy was stabbed in his bed by an unknown person who RCMP said broke into the home.
The NHL found no evidence that San Jose Sharks forward Evander Kane bet on NHL games or tried to throw games after investigating allegations made by his estranged wife.
The cases were among 759 new cases found in B.C. over the past 24 hours, according to a statement from the provincial Health Ministry.
Three Vancouver Island police departments say the province will no longer pay for their naloxone supplies — a life-saving medication officers use frequently, in the midst of the overdose crisis.
Police say a man who was wanted on several outstanding warrants in Central Saanich and Victoria was arrested Tuesday night.
An Ontario woman whose home was left a mess after a botched driveway sealing job said 'it looked a bomb exploded' on her property.
Liberal Julie Dzerowicz has won reelection in her Davenport riding by the slimmest of margins, CTV News declares.
Most of Quebec's politicians say they're ready to work together to legislate a ban on anti-vaccine demonstrations near schools and hospitals, creating heavy fines, but the sole Conservative MNA says she's not convinced.
All students at Sainte-Odile Elementary and École Saint-Émile were sent home due to an outbreak of COVID-19 cases, officials confirmed Wednesday.
CTV News’ decision desk officially announced early Wednesday evening that incumbent Bloc Quebecois MP Yves Perron narrowly defeated Brosseau by 933 votes.
All local roads in Southwest Middlesex are closed to the public and a significant weather event has been declared.
The rain continues to come down in southwestern Ontario and will last until Thursday.
Several households had to be evacuated Wednesday evening after a natural gas leak in an east London neighbourhood.
Proof of vaccination required at some Waterloo Region businesses as Ont. launches certification program
Waterloo Region residents will need to show proof of their COVID-19 vaccination status to access many non-essential businesses starting Wednesday.
There's growing confusing surrounding Alliance Hockey the Ontario Minor Hockey Association's decision to mandate COVID-19 vaccines for players, parents, coaches and staff.
Health officials in Waterloo Region reported two COVID-19-related deaths and 18 new cases on Wednesday, as active infections dropped significantly.