My name is Jody and I am the proud grandmother of this beautiful boy, Leo. He is one of the bravest warriors and he is loved beyond measure!
Leo has been diagnosed with a gene mutation called KCNB1. At that time, he was believed to be about the 65th person in the entire world to be diagnosed with this specific gene mutation. It causes him to have a rare form of epilepsy and he has multiple types of seizures. He has many developmental disabilities in addition to the seizures. He has trouble walking, is non-verbal, and he needs special equipment in order to help him get through his days and nights safely. Which brings me to this fundraiser. While insurance has paid for some equipment already, Leo’s parents are no longer together and he lives in two households. The equipment is large and bulky and it’s not possible to transfer this equipment back and forth week after week. He is in desperate need of a second safety bed called a Cubby Bed and other equipment including a bathtub seat, gate trainer, and activity chair.
Recently, Leo had a fall and he hit his head. He was wearing his helmet and his pads (he often looks like a fully dressed goalkeeper with all his gear on) but still ended up with a small brain bleed. He had 3 ER visits and then a transfer to Helen DeVos Children’s Hospital. The bleed was accompanied by lack of blood flow in another part of his brain. He had lost the use of the right side of his body. He was lethargic, wouldn’t eat, drink, or wake up for any significant amount of time. The doctors ran an abundance of tests including labs, MRIs, CAT scans, lumbar puncture, and EEGs. They suspected a brain infection or progression of his disease. But everything came back normal. No infections, just the small bleed and lack of flow, but they still couldn’t say why. The fall had to be the reason, even though it didn’t seem to be a big deal at the time and he was wearing his helmet.
Going forward, we are trying to make life as safe as possible for him. Which is why we are asking for your help. Brand new equipment is very expensive. A new Cubby Bed is about $13,000. We have searched for used equipment to make it more affordable and double our chances of keeping him safe. He deserves to be with both parents that love and adore him so much and not be tied down to one home with limited time with the other parent. Leo has several brothers and sisters whom he loves spending time with, as well.
Please, if you can give anything at all it would be appreciated more than we would ever be able to show. Every dollar and every share counts!
Thank you from the bottom of our hearts for taking the time to read this and pass it along. We just want our KCNB1 BRAVEONE to be safe and secure.
