Memories of a short-lived miracle kid

In her 10 years of life, Michaila Disney never stopped smiling - despite her illness

October 27, 2006|By Nia-Malika Henderson | Nia-Malika Henderson,SUN REPORTER

Miracle Michaila.

That's what they called her, and that's what they inscribed on Michaila Louise Disney's pink welcome home cake when she was released from the hospital for the first time.

She was born tiny - 4 pounds and 5 ounces - and with a rare genetic disorder called MIDAS Syndrome that left her blind, deaf and with a malformed heart and brain.

But in her 10 years, Michaila lived big - outpacing expectations and charting her own course. In the end, though, after 32 surgeries, Michaila was just too tired, her mother said.

She died early Saturday morning.

On Wednesday, her family and friends gathered at Chesapeake Christian Fellowship in Davidsonville to celebrate her life and mark the milestones she made.

To her family and the surgeons - among them Dr. Benjamin Carson, director of pediatric neurosurgery at the Johns Hopkins Hospital - who tirelessly worked on Michaila's broken body, those milestones looked a lot like miracles.

Her parents, Paul and Katherine Disney, wondered if she would ever raise her head after she was born in 1996. And then, there she was, Miracle Michaila, at the dinner table reaching for food from her brother's plate at the family's home in Edgewater.

They wondered if she would ever sit up. And then there she was, riding a horse.

They wondered if she would ever walk. And then, there she was, pushing her wheelchair by the time she was seven.

In her 10 years, doctors performed facial surgery on Michaila, cracked open her skull to make room for her growing brain, and implanted shunts, a titanium plate, a catheter and a hearing aid. (Michaila eventually regained hearing in her right ear and didn't need the implant - another miracle, her father said). With the surgeries, there was always severe pain and the risk of major complications.

But, as Carson once told the family as another surgery approached, "Michaila will be Michaila." He knew, family members said, that Michaila would press on all the same, teaching her doctors about her illness and teaching her family and friends compassion and courage.

"Michaila was full of life," her father said. "She had a lot of challenges but she met them with vigor."

MIDAS (microphthalmia, dermal aplasia, and sclerocornea) Syndrome is a chromosome abnormality where one of the pieces of a chromosome is missing. The disorder affects vision and other body processes, depending on which chromosome is defective."Johns Hopkins [Hospital] didn't know much about it, and she kind of wrote the book on it. Nobody knew how she would develop," Disney said. "We just kept pushing her and never gave her any boundaries. We were able to say `Go Michaila' because there's no reason you can't."

And even if there were a reason, Michaila probably wouldn't have stood for it, her mother said. Strong-willed, lively and independent, Michaila knew what she wanted, and she went after it. Her grandfather, Pastor James A. Packett of Chesapeake Christian Fellowship, called her a fighter.

"Things often looked bleak," he said. "But Michaila always showed us love, the unconditional love of a child."

When her sister, Rachel, 7, would do her Swan Lake routine, Michaila, who loved classical music, would giggle with glee.

Even after many surgeries, she would often bounce back, at one point climbing up the bunkbeds in search of her brother, Nathaniel days after her release.

"She was a good sister to me," Nathaniel, 9, said at the memorial service. "I will always trust her."

They were a trio, playing in the family room and learning life together, Disney said. Rachel sang to her older sister and brought out the stuffed animals when she was ailing in bed.

"The other two kids made her move forward and made her feel normal," Michaila's mother said. "And it made me less protective."

Michaila helped move her parents, who were both 20 when she was born, forward, too.

Sleepless nights rolled into work the next morning, but they kept on going, pushing Michaila and pushing themselves.

At the memorial service, relatives said they hoped Michaila's legacy would teach people to reach out to the disabled, helping to show that they can lead full and vibrant lives.

The church started a group called Michaila's Friends to minister to children with special needs.

"Michaila lived and breathed with us, she was all through our home and every room I walk in, I see her," Disney said. "She made herself known, and she was very determined to do what she needed to do in her life."

nia.henderson@baltsun.com

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