Save Sophia after insurance denies life-saving treatment

In July of 2024, we at Sweet Buffalo had the pleasure of meeting Baby Sophia, a courageous child who was battling a life-altering illness called neurofibromatosis, also known as NF1, a genetic disorder that presents numerous challenges.

Sophia was found to have a hydrocephalus and a tumor on her optic nerves, requiring a chemotherapy called a MEK inhibitor.

Although Sophia’s tumor location is inoperable, her courage remained. Sophia had surgery to alleviate fluid buildup on her brain.

Sophia is on medication for her tumor and has been for seven months. This medication is $1,800 a bottle and she is on two bottles a month for the next two years.

Sadly, Sophia’s insurance has now denied this lifesaving treatment. The reason being because they said it has to be in conjunction with a secondary medicine. But that is not a medicine the oncologist recommended for her treatment plan. So obviously her parents don’t want to put her on an unnecessary medicines when she already has enough going in her tiny body.

No parent can afford to spend $86,400 on medications. That’s $1,800 times two a month for two years that Sophia will need to be on this.

While we advocate for Sophia’s insurance to approve this medication, we want to help raise funds so her family doesn’t have to worry about it in the meantime.

Please consider making a donation to help and shame on insurance companies for what they make these parents go through to save their own child’s life. Her insurance company is Express Scripts.