Help this family's fight against battens disease
Hi my name is Jeanine Dalton.
I am a nurse from Calgary, Alberta, Canada. I am fundraising money for the beautiful Lamprecht family and asking for support to help them fight Juvenile Batten's disease.
THREE out of their FOUR children have been diagnosed with this terminal condition.
On August 7th, I will be hiking 3 difficult mountains (The Triple Crown), within one day. It is a total of approximately 22.6km and 2920m elevation. My hope is to raise money for Katie and Jacob Lamprecht and to raise awareness of Juvenile Batten's disease. I want to help alleviate some financial burden this family will have to endure. 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 requiring 24 hour care and eventually death. 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. Prior to being diagnosed, children with Juvenile Batten's disease appear PERFECTLY healthy and appear to be "normal kids". Because of this, the diagnosis often comes as a massive shock to the family.
They have to watch their children slowly deteriorate over the years.
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. The THREE youngest children have been diagnosed with Juvenile Batten's Disease within the last 12 months.
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 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. Katie and her husband Jacob are not able to work normal occupations right now due to the increasing demands of parenting terminally ill children. They also wish to get as much quality time with them as possible.
On top of all of this devastating news, 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 during the middle of a pandemic. I encourage you to please help if you are able to in any way, including sharing this story if you are unable to contribute.
Thank you so much for taking the time to read this post and if you are able to, please contribute to this cause. 100% of proceeds go directly to Katie and Jacob Lamprecht.
The funds from the donation will be used either for medical care such as respite, medical equipment or will be used for the expenses of caring for terminally ill children. Katie Lamprecht is listed as the beneficiary to this fundraiser and will receiveall the funds.
It would mean so much to myself and to this family if you are able to contribute, no matter how small the donation. Together we are strong.
Thank you,
Jeanine Dalton, LPN
https://www.google.ca/amp/s/beta.ctvnews.ca/local/calgary/2021/6/24/1_5484673.html
https://calgary.ctvnews.ca/mobile/calgary-woman-reaches-3-mountain-summits-to-raise-funds-for-siblings-with-terminal-illness-1.5543230
