Help Max with Life changing, Life saving Medicine

Our 5 month old son Max has been diagnosed with a rare seizure disorder called Infantile Spasms (IS), with extensive structural abnormalities in his brain (bilateral perisylvian polymicrogyria). He has seizures multiple times a day, & his diagnosis means that more severe seizures, epilepsy, serious developmental delays, & even death are all concerns for our baby. Some delays, particularly in speech & swallowing, are almost definite. And the effect of his seizures is cumulative - the more he has, the more damage to his brain, & the more impairments he will suffer for the rest of his life.

The first-line treatment for IS is ACTH, an injected gel called Acthar. This medicine is $40,000 per vial, & he will need 4-5 vials for his treatment. Treatment can prevent more spasms, protecting our smiling, happy baby from profound, lifelong challenges, & even save his life.

Our insurance provider is denying claims to cover Max’s Acthar. This is not a new drug. It is not experimental. This is not an off-label use of the drug. This is the FDA-approved, Gold Standard treatment for Infantile Spasms. To try & save him from severe brain damage, we have given the hospital the go-ahead regardless of insurance & Max started treatment on Thursday 2/12 We have been here since Sunday 28/11 & Max’s condition has left us unable to return home for the foreseeable future.

He seems to be doing well, & we are seeing hopeful signs that it is working. However, we need help to cover the sheer enormity of this expense & this amount will ONLY cover a 4 week supply of his Infantile Spasms medication. Once this treatment is complete, we will then have to address the structural brain abnormalities - we must wait & see if he develops other seizure types, & can determine a treatment course once we know what he’s experiencing. We will likely have new specialty drugs to cover, plus a battery of doctors, specialists, travel to appointments, time off, & even additional bills outside insurance.

This is going to be a long, long road for our beautiful, amazing, brave boy. But he is the picture of joy & resilience - I want to be like him when I grow up. He has an enormous circle of love & support, & God is with him (& us) every step of the way. We have an INCREDIBLE team at Royal Children’s Hospital & we are forever in their debt - the doctors, nurses, pharmacists, specialists, therapists, dietitians, cafeteria & housekeeping staff have All. Been. Amazing. They are taking wonderful care of Max (& mum).

We are genuinely grateful for your help with whatever you can give. Even a small amount adds up! Your help lets us keep up with his treatment & get Max on the road to recovery - it helps us focus on him instead of worrying how our family’s future will be impacted by this financially catastrophic event. And please pray for every other child & family here with us. They are ALL going through hell. They are ALL exhausted. And NONE OF THEM should have to fight anything other than the illness their child is suffering from.

Happy holidays, & thank you to EVERYONE who has overwhelmed us with love & support.

Sincerely,
Max (& Tracy & Justin & Eli)