Gabriel’s Walk with CLN2

Hi, my name is Vanessa Lindemeyer, Gabriel’s mom. I never thought I would ever be doing something like this in a million years but I’m reaching out for help. My son Gabe was diagnosed with a rare genetic disease called CLN2. Back in March 2021 but it all started in August 2020, 3 weeks before his 3rd birthday. We just didn’t know what it was at the time. CLN2 is a rapidly progressing brain disorder. Children with CLN2 produce deficient levels of the enzyme TPP1. Without enough of this enzyme, children are unable to dispose of all the wastes normally metabolized in their cell’s lysosomes. The wastes accumulate in organs, particularly the brain. First signs are speech delays, then seizures, seizures will continue on during his whole life and will get worse as the disease progresses. A feeding tube and a wheelchair will be needed by age 6. Complete blindness by age 6 or 7, Keep in mind every kid is different and only 258 kids world wide have CLN2. Dementia will occur and life expectancy is between ages 6-12.

 

My beautiful sweet baby boy will be 5 in August. He weighs 35 lbs.. He got his feeding tube May 23, 2022 after we got back from his Make-A-Wish trip. Gabe wasn’t eating, only drinking water and would sleep all day.. even on his special trip, he wasn’t doing so well. So we rushed him to Riley Hospital.. the next morning he got his feeding tube in. It’s been 2 weeks now since Gabe got his feeding tube. He can no long sit up by himself, he doesn’t crawl anymore, and he won’t stand up with help. My poor man just lays in bed or on the couch all day watching Tv because he can’t support himself anymore.. My husband and I knew this day would come but we are praying that we could raise the money to get Gabe a Gait Trainer. He would be supported to where he could stand on “his own”, walk and even run. He could build his leg muscles back and be able to feel a little normal again. To be a kid again, play with his siblings or play chase with his dad..

 

Insurance is so slow on things.. we ordered a “grow with me” stroller that supports him in every way he needed. We ordered it back in October of 2021 and still have not received it.. I have called almost everyday begging to have a Gait Trainer sent to us ASAP because Gabe doesn’t have months to wait.. he needs this soon. The longer we wait the faster Gabe deteriorates. We are afraid if we wait for insurance to get it to us Gabe will be bedridden by then.. We would pay for it on our own but it’s very expensive. We have 4 children, bills etc. you know how life is. My husband does have a job but we simply don’t make enough to afford the medical equipment Gabe needs. He also needs a shower chair that we strap him into, to bathe him. Since Gabe can no longer support himself, it is very difficult giving him baths. Paying for the equipment Gabe needs on our own is honestly impossible and insurance takes too long. When we submit the order for the Gait Trainer Gabe would have it in 2 weeks!

 

If Gabe had a Gait Trainer I promise you, he would be the happy little boy he once was. He got to test one out back in April and he absolutely LOVED it. I have a video too! My husband and I just wanna see our little boy smiling and “running” around again.

 

My son also has a hard time staying asleep so we would like to get him a weighted blanket and anything else to make him comfortable in bed. We aren’t sure when but we know Gabe will be bedridden one day and we would like to have his bed comfortable as possible!

Gabe needs a lot of vitamins and minerals that are liquids or in a powdered form. He is feed mostly through a feeding tube so everything is blended up. These can be very expensive as well when buying every month. Our main goal is to get the Gait Trainer and bath chair but also to help the expenses of Gabe’s other needs. 

 

Thank you so much for reading Gabe’s story. If you have questions please feel free to reach out to me!