Batten Disease - Help for Cohen and Family

This Go Fund Me page is created for Cohen by family members on behalf of Curtis & Julia Kauk and big sister Darcy Kauk (6 years old) of Oakbank, Manitoba.

In 2022, Cohen Roger Kauk (now 3 ½ years old) was diagnosed with Batten Disease (CLN2). Batten Disease is a terminal, rapidly progressing and rare genetic disorder that affects the brain and nervous system. 

Many children with Batten Disease will show no concerning symptoms until about the age of 3 to 3½ years old. It starts with seizures and is quickly followed by Ataxia. Coordination and balance diminish quickly, they fall frequently and lose their ability to talk very rapidly. Without treatment, many are not able to walk or talk anymore by the age of 5 to 5½ years old. They will also experience loss of vision and will eventually become completely bedridden. This disease is sometimes referred to as “Children’s Dementia” and there is currently no cure.

Cohen’s first trip to the hospital was on July 8th, 2022 when he collapsed at the park after having his first big seizure. He was diagnosed with Epilepsy not long after and has been on medication to manage his seizures since. 

By November 2022, the symptoms progressed quickly; seizures occurred more frequently, and his speech and motor skills were noticeably affected. Medications were increased - and after various tests and hospital visits, Cohen was officially diagnosed with Batten disease on December 12th, 2022.

Cohen is scheduled to have surgery in early January 2023 to insert a port in his skull through which he will receive enzyme infusions. The medication he will receive is called Brineura, which is just out of clinical trials since 2017. There is no specific treatment known that can reverse the symptoms of any form of Batten disease. There is only one treatment approved and the Brineura treatment is only for children with Batten (CLN2). There are 13 forms of Batten disease.

Brineura will be administered every 2 weeks through the port using a method called intraventricular infusion, which will deliver the medication directly to a ventricle in the brain and into the fluid surrounding the brain. He will be sedated for this 5-hour procedure which will be done bi-weekly at the Winnipeg Children’s Hospital.

The surgery and infusions are not a cure - but will have the potential to slow the progression of the loss of his skills and offer a more improved quality of life. Cohen will be completely dependent on his family as his round-the-clock caregivers.

Cohen’s symptoms continue to progress quickly in the weeks leading up to his scheduled surgery. He is getting more frequent seizures and losing his balance; unable to walk more than 3-4 steps before his legs can no longer hold him up.

Both Curtis & Julia will be taking time off work to keep their little boy happy and secure at home after his surgery and to be with him during his bi-weekly hospital appointments. We will keep you updated on Cohen’s condition throughout his treatment. Your prayers are needed for our beautiful, brave little boy and his family! 

  

Cohen loves everything trucks and tractors! Cohen is always smiling and usually laughing. His forced cuddles are sweet and could last forever. He loves climbing everything as there is always something more to see up higher. Cohen LOVES the great outdoors, especially playing in a sandbox with his trucks. At the park, he loves the slides and the swings. Cohen has his own way of communicating with us and even if he doesn’t know you, he will try climbing right onto your lap for a cuddle.

Your donation will be used to allow the family the ability to stay home and be together during this time as they care for Cohen and make him as comfortable as possible. 

Funds raised will also go towards:

-Medical expenses that are not covered by insurance. (Medications, special needs equipment as needed)

-Treatment for Cohen that is not covered by insurance (speech therapy, physical and occupational therapy)

-Counseling for family members

-living expenses to allow Cohen’s mom and dad to stay home with him beyond the allotted days their work will accommodate.

-transportation to treatments and appointments

We thank you very much for your support.

Please refer to the link below that will go into further detail on Batten Disease.

https://www.youtube.com/watch?v=1rjZ1NMAuio