Help Gage fight ATLD2 and Complete his Bucket List!

Our sweet boy was born at 27 weeks gestation and has fought his entire life to beat the odds. In Aug of 2022 he had a sudden overload of neurological complications that were left undiagnosed until now. Over the last 10 years he has seen countless specialist, therapists, he’s had scopes and biopsies, days spend bed bound and weeks of regression. He has slept for days on end adjusted to his new “normal”. We have traveled near and far to get treatment for Ataxia, Autism, Acrocyanosis, cerebral palsy, epilepsy, feeding difficulty, failure to thrive, sensory processing disorder, GERD, abnormal gait, Aphasia, conductive hearing loss bilateral, PVL, Episodic Ataxia, Anxiety, Dizziness, generalized weakness, Abnormal Movement and now Ataxia-Telangiectasia-like disorder type 2.

There is no cure for ATLD 2. The majority of children who have his progression of disease don’t see age 20. There are outlier that have lived into 20-30 and we can all only ever hope to see those results. We are clinging to hope and steadfast in prayer. Medicine advances all the time and although this is a very rare genetic disease 9 years is a long time in the medical world. We are not counting our cards just yet!

This month he will be reassessed by the wheelchair clinic for a motorized wheelchair (somedays he cannot use his manual wheelchair due to weakness, dizziness, etc), a medical stroller (for days he cannot be independent at all), a trike because he can no longer ride his bike, and new hearing aids (our out of pocket for hearing aids after insurance is 4000.00). PT and OT will become more aggressive, and we look forward to our consult with the Mayo Clinic! Insurance will only pay for part of the wheelchair OR the stroller. We NEED both. They won’t cover the trike at all. They don’t see it as a necessity.

His care involves a lot of travel, time off of work (Dad is the only one working), and insurance doesn’t cover near enough for us to break even. His 2 older brothers and younger sister have been so strong right along with him. We ask for your prayers over his physicians, condition, and our hearts. If you feel lead to donate to our family or love on our family through prayer, know that we appreciate you!

In the last 10 weeks he has been hospitalized 4 times. He has received consult after consult, a stroke work up, a lumbar puncture and subsequent blood patch. We have added medications to his daily list, made strides, had set backs and leveled out for now. He has written many more pages to his novel, built Lego sets donated by Child Life, and tried his best to walk to the end of the hallway to see the sailboats. This latest hospital stay has lasted 11 days and with our new diagnosis and current condition it was suggested he make a Bucket List. Boy do we plan to see this list completed!