Brave 6-Year-Old Battles Same Brain Disease as Her Dad

Summer and Jeremy Butler. Photo courtesy of the Butler Family. The Butler family of Hallsville, Texas, got a double batch of bad news this March: Jeremy Butler, 35, and his 6-year-old daughter, Summer were both diagnosed with Chiari malformation type 1, a rare condition in which the brain tissue extends into the brain canal. While a local community fundraiser held last week in their hometown raised some money to help pay for the family’s medical bills, the Butlers still have a way to go to reach their goal of $15,000. To help with their attempt, the Butlers have set up a fundraising page, “Daddy & Daughter Brain Surgery Fund,” and are also sharing their story on their Facebook page.

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“We are hoping to be able to cover our deductibles, help with co-pays for any follow-up appointments, cover [the cost of] medicines and additional surgeries, as well as the out-of-pocket expense of having to stay in Dallas for the surgery and recovery,” Butler tells Yahoo Shine. If the family raises more funds than they need, he says they plan to help someone else in need. “If we do end up with an excess, we want to find another family that is going through treatment for Chiari malformation, or another sick child, and offer them assistance.”

Butler tells Yahoo Shine that he suffered from headaches “for as long as I can remember,” but in the past year, they had become more severe. An MRI in March resulted in a diagnosis of Chiari malformation type 1. At the same time, Summer had been showing similar symptoms — headaches, tingling in her arms and fatigue — and an MRI confirmed she was suffering from the same condition.

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According to Ulrich Batzdorf, M.D., professor of neurosurgery at the David Geffen School of Medicine at the University of Los Angeles, 10 to 15 percent of individuals diagnosed with Chiari malformation occur within the same family.

Jeremy had surgery September 17 and is recovering well. “I’m a network engineer and I am used to handling multiple things at once and dealing with high-level tasks. I’ve had to slowly work my way back into that.” His daughter is scheduled for the same surgery on Friday. The funds will also be used for two additional surgeries that Summer needs. One is to treat a large, potentially cancerous birthmark on her back. Additionally, the 6-year-old also suffers from a protein deficiency that compromises her immune system, and vitiligo, a skin condition in which the skin loses melanin, resulting in irregular white patches. “She is a fighter,” says Summer’s mom, Tanya Butler.


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The Butlers live two and a half hours from Texas Children’s Hospital in Dallas, where Summer’s surgery to treat the Chiari malformation will be performed. According to her father, Summer’s recovery could be impacted by her two additional conditions, so he and his wife, Tonya, are anticipating recovery time of up to a month –– double the two weeks it took Jeremy to recover. The good news? Surgery is a very successful form of treatment, Batzdorf tells Yahoo Shine, noting, “If the surgery is successful, the condition will not come back.” 

Here's to hoping it is.

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