Source: Sherman Publications

Community pulls together to help family in crisis

by Mary Keck

April 24, 2013

Like many ten year olds, Maysie Jean Madison sings along with Katy Perry and Justin Beiber. She loves writing, bike riding, painting her nails, and Sponge Bob Square Pants. But since March 7 when Maysie was medically-induced into a coma due to seizures in her brain, she hasn’t woken up to enjoy the usual things.

“It’s like a bad nightmare,” said William Madison of what he’s experienced. He said he started a Facebook page called Wake Up Maysie Jean because he feels helpless. “I wanted to feel like I’m doing something,” he said.

“It makes you pull things closer to you and appreciate the things you do have,” said Emery. Something Maysie’s family has been thankful for is all the support they’ve received. “Everyone’s been pouring out so many good prayers and thoughts,” she noted with gratitude.

“The community is just coming together and doing so much because they understand that there’s going to be a ton of medical bills that are going to come from this,” Emery said.

Mel’s Grill, where Maysie’s mother works plans to hold a fundraiser. Maysie’s school, Pine Knob Elementary, is dedicating the entire month of May to raising money for Maysie. They kicked off Mondays in May for Maysie at their talent show where they collected $257.

On the first Monday in May for Maysie, students at PKE who donate a dollar can wear pajamas to school. On the next Monday, they’ll be selling white chocolate daisies for Maysie. They plan to sell sparkly pink bracelets too.

Anyone interested in donating can give to the Maysie Madison Fund at TCF bank or the Wake up Maysie Jean/Maysie Jean Fund at Clarkston State Bank. Check for updates on Wake Up Maysie Jean on Facebook.

“Keep the prayers coming. That’s the biggest thing,” William Madison said.

When Maysie started having seizures, she was taken to the emergency room, but try as they might, her doctors were not been able to stop the seizures. They treated her with medications without success, and every test Maysie underwent didn’t reveal a cause. Finally, to keep her from seizing, Maysie was put into a medically induced coma.

“She went from running around and being fine to all of the sudden, all of this, and nobody has any answers for it,” Maysie’s Aunt Jenny Emery summed up.

Once in the hospital, doctors used Electroencephalography (EEGs) to record brain activity and concluded that Maysie’s seizures were occurring in her right, frontal and temporal lobes. They diagnosed her with Rasmussen's encephalitis and determined stopping the seizures would require brain surgery.

“They told us the only way she would live a seizure-free life would be to do a hemispherectomy and remove the whole right lobe,” said William Madison, Maysie’s father. So, the surgery was scheduled for March 17 at the Detroit Children’s Hospital.

Maysie’s doctors told her parents the outcome of her surgery would be no seizures, weakness on her left side in her hand and leg that would require physical therapy, but no major cognitive issues once her brain had time to recover and compensate. “But that’s not what happened after the surgery,” said Emery.

As the medication to keep Maysie Jean in a coma was reduced after surgery, the seizures started again. This time, the left hemisphere of her brain was seizing. “That’s when they put her back into the coma,” Emery noted.

The results of the surgery revealed Maysie’s seizures were not caused by Rasmussen's encephalitis. Although they’ve conducted numerous tests, doctors have not been able to pinpoint the illness causing Maysie’s condition, which leaves them with little understanding of how to treat it.

“The doctors are not giving up. They are willing to try anything they can think of, but they are kind of stuck,” said Emery.

One treatment has yielded some positive results. Since trying five intravenous plasmapheresis treatments, Maysie’s EEGs have shown less seizure activity.

Over the past week, Maysie’s doctors “started weaning her off the coma meds,” Emery explained. Maysie’s hand and face muscles twitched, and she opened her eyes and was able to follow movement with her eyes. “She has started to become more responsive,” said Emery and added, “she can’t come fully out of the coma because she’s still experiencing seizures.”

Maysie’s father and aunt feel the Detroit Children’s Hospital is the best place for Maysie, and she’s getting the best possible care. Getting to the bottom of what’s causing Maysie’s seizures continues to be a challenge, though. Maysie’s family has heard her condition described as rare and unique. “We’ve never seen this before,” they say.

To solve the mystery of Maysie’s illness, her doctor’s continue to run tests, but even studying the cause of her seizures has presented problems.

“They sent out some cultures and blood samples to a lab, and the lab wouldn’t do the testing because Medicaid wouldn’t pay for it,” said Emery. “That was frustrating.”

But, it wasn’t the last time doctor’s were stalled when trying to find out what’s wrong with Maysie. To narrow down the possible causes, they want to perform genetic testing on Maysie and her parents, but the tests are not covered by Medicaid and could cost almost $12,000.

“We don’t know what’s wrong and to not be able to have all the tests done that might possibly find out because insurance won’t cover it, I think that’s just awful,” Emery stated.

Since Maysie’s has been in the hospital her family has been through a lot. Maysie’s mother, Stephanie, hasn’t left her daughter’s side and is staying at the Ronald McDonald House near the hospital.