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Help this family’s fight against Batten’s Disease
August 7, 2021 @ 6:00 am - 9:00 pm| Free
Hi my name is Jeanine Dalton and I am fundraising for the beautiful Lamprecht family and asking for support to help them fight Juvenile Batten disease. The goal is to raise enough money for this family to obtain the treatment they would need to help drastically slow down the disease and/or to help with general medical costs.
To help fundraise and raise awareness for this disease I will be hiking the Triple Crown in Canmore within 24 hours at the end of August. The Triple Crown involves hiking Lady Macdonald, East End of Rundle and Ha Ling (Grotto mountain may be substituted if one of these mountains is closed). It would be a total of approximately 22.6km and 2920m elevation. My hope is to raise money and awareness forBatten disease and to help alleviate some financial burden. 100% of donations go directly to the family.
Juvenile Batten’s disease is an extremely rare and terminal disease that attacks the central nervous system. Usually, it is not diagnosed until the child is 5-6 years of age when symptoms become noticeable. Symptoms include vision loss,
seizures, dementia, speech and motor problems. These symptoms continue to progress until the child is bed ridden and requiring 24 hour care. Juvenile Batten’s disease is terminal and there is no cure. The life expectancy of a child with Batten’s disease is teens to early twenties.
Katie and Jacob Lamprecht have four children; Drake their eldest is 13, Kiara who is 10, Hannah who is 8 and AJ who is 5. THREE out of their FOUR children have been diagnosed with Batten’s disease.
The Lamprecht’s had thought that their daughter’s needed glasses as they were having difficulties seeing at school. Their decline in vision seemed to progress quite rapidly. Katie and Jacob took their daughters to the optometrist for what was supposed to be a routine checkup. Up until this point they have appeared to be completely healthy children. They loved playing with one another, attending school and were very happy, energetic children.
In November 2020 this family received the heart breaking news that their 2 beautiful daughters Hannah and Kiara had a confirmed diagnosis of Batten’s disease. In the second
week of June 2021 they received the unfortunate news that their youngest son AJ WAS ALSO CONFIRMED positive for this genetic abnormality. This means that 3 out of their 4 children have Juvenile Batten’s disease.
This is a strong and resilient family. Katie and her husband Jacob are the most kind, generous and amazing parents I have ever met. Their ability to find light and faith in all situations is remarkable. The unshakable love that they have for their children is inspirational. They have done everything in their power to fight
this disease but THEY NEED OUR HELP. Their beautiful kids are smart, sweet and lovable. Each of them has their own unique and wonderful personality. Hannah is a very cuddly and soft spoken little girl who loves to share and play with her
toy horses. Kiara is a witty and smart little girl who has enormous generosity for such a young age. AJ is a very energetic, playful little boy who can keep you running around for hours, and you’ll be loving every minute of it. Drake the eldest, who hasn’t been inflicted with Batten’s disease, is a strong and courageous young man who loves his family dearly.
Although there is currently no cure, there are experimental treatments at the Duke University in North Carolina. It is a stem cell transplant. The cost to complete this procedure is $1,775,000 for EACH CHILD. As it is performed in the United States, Katie and Jacob would have to pay out of pocket. Even if this family is
unable to partake in the treatment the medications, medical treatment and medical support that they will need will be very costly financially.
A story was previously done by Global news in November 2020 when the two girls Kiara and Hannah were first diagnosed.
As stated above they now have a third child with a confirmed diagnosis. Katie’s mother also recently passed away in November 2020 due to cancer.
This family has experienced so much pain and loss this past year and it would be so beneficial to this family if you could cover this story and reference my go fund me link to help raise awareness and funds. https://gofund.me/ea27c86a
Katie Fausak: 1-780-293-3585
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