Support Caden's Battle Against Rare Disorder

Our 4 (almost 5-year-old) son Caden has been diagnosed with an extremely rare genetic disorder called Creatine Transporter Deficiency with Epilepsy. It is a gene mutation of gene SLC6A8.

He has been having seizures since July 2024. He has been so tough through all the ambulance rides, hospital stays, and tests along the way. This disease can be associated with seizures, along with other conditions including learning difficulties, behavioral issues, muscle weakness, etc. We are also having him tested for Autism, which can be caused by CTD. His treatment plan includes three compound supplements that he will have to take 3 times a day. Due to his age and weight, he has to have special formulas made for his dosage. They are technically over-the-counter medications, so commercial insurance will NOT touch them even though they are medically necessary. We have applied for Tefra Medicaid, which will cover them 100%, but we do not know if or when he may be approved. In the meantime, it is very important that he starts treatment to ensure that the CTD complications do not progress. The supplements are quoted to be between $600-700 a month as of now.

We hate to ask for any help, but the healthcare system we have is not allowing us to give our son the help he needs currently. Any help would be greatly appreciated and would go to helping the sweetest boy ever!