Newburgh Boy's Rare Battle: Fighting Sclerosis and the System for Treatment Justice

NEWBURGH, Ind. (WEHT) — A 16-year-old Newburgh boy is battling a rare life-altering disease.

His family says time is running out for his health. The family says the insurance coverage they desperately need to afford medication has been denied several times. An announcement made by the insurance carrier, on Friday, could mean renewed hope.

16-year-old Donovan Scheessele should be worrying about high school friends and sports and instead is fighting a rare disease: Baló’s Concentric sclerosis. It’s a condition so rare some doctors go their entire careers without ever seeing it.

“…of all the Multiple Sclerosis cases in the world, less than 1% have this Baló’s situation,” says Daniel Scott, Donovan’s father.

BCS attacks the brain’s protective coating, leading to neurological symptoms and swelling.

Scheessele’s parents say they noticed something was wrong in February. His speech began to slur. His response to questions came at a slower pace, and walking became difficult.

“Donovan was complaining of having his right arm, and his right side going numb. He was having headaches and just didn’t feel right. He was having issues walking. His gait was way off and he really started to actually limp,” says Donovan’s Father.

The teenage lacrosse player with dreams of competing at Hanover College suddenly saw a huge difference in how he was able to show up for practices.

“I could feel my knee draw back. It feels like I’m slipping like a pothole,” says Scheessele.

Scheessele’s pediatrician referred them for an MRI and everything changed.

“They came out and said we’re going to the E.R. immediately. We were really surprised. We said ‘what’s going on?’ and they said ‘there’s a large mass in his brain’. Finally, after three months, we did get a phone call from St. Louis Children’s Hospital,” says Donovan’s father.

The family says the mass will never go away, but proper care can halt growth and improve his quality of life. The next phase of treatment includes a medication with an $100,000 annual cost. His family says Anthem Blue Cross Blue Shield denied their claim three times before it was approved Friday Afternoon.

In a statement to Eyewitness News, a representative writes:

We understand how important access to care is for our members and their families, and we appreciate Mr. Scheessele and his healthcare providers for their patience and collaboration throughout the process to approve his treatment.

Anthem’s medical coverage decisions are guided by clinical evidence and the individual medical information provided for each case. In this instance, the medication was requested for a use that is not approved by the FDA (often called “off-label”), and we were unable to initially approve this treatment without further documentation about the member’s situation.

After making our initial determination, we spoke with the member’s healthcare provider and shared guidance about the appeals process. Through the appeals process and additional reviews, we were able to approve the medication.

We recognize that navigating the healthcare system can be challenging and we remain committed to making sure our members understand their options and receive timely support. We wish Mr. Scheessele the best and we remain committed to supporting him throughout his journey.

The family says they are still waiting on official confirmation from Donovan’s doctors.

“I have to deal with it for the rest of my life. It’s going to have ups and downs, but I’m going to be able to get through with the medicine I’m going to take,” says Scheessele.

The mass is the size of a fist. His parents say they’ve been informed its one of the largest the world has seen in relation to this condition.

“His sense of mood changes where he gets angry easier…which is a struggle because you’ve always had this kid that’s been really happy go lucky,” says Donovan’s father.

“We’ve put God at the forefront of all of this and Donovan is an amazing kid,” says Margaret Scott, Donovan’s mother.

Scheessele’s lacrosse team is supporting him by wearing his number on their helmets all season. He is also attending school online to help with transition.

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