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Updated: Sunday, 13 May 2012, 1:51 PM EDT
Published : Sunday, 13 May 2012, 1:24 PM EDT
RICHMOND, Ind. (AP) — Elisha Nadler is passionate about educating the world about Dandy-Walker Syndrome.
She's so passionate that she secured a proclamation from Indiana Gov. Mitch Daniels naming May as Dandy-Walker Syndrome Awareness Month in Indiana.
Elisha had never heard of the congenital brain malformation syndrome until April 2011, when her then-4-month-old daughter, Eden, was diagnosed with it.
"My goal is to get as many people to know this and hear about this," Elisha said.
More information before the public means more awareness. More awareness means more research and more research means more help for Eden and others faced with a diagnosis that at first seems grim.
Elisha said the first information she received was that Eden likely would be confined to a wheelchair, have mental disabilities and wouldn't live long.
"She's pretty much like a miracle case," Elisha said. "We were told she'd be in a wheelchair and she's into everything."
Elisha's husband, Adam, and their children, Adam Jr., 11; Anthony, 9; Emily, 7; and Eden, 18 months, didn't just celebrate Mother's Day on Sunday; they also celebrated Elisha's passion as a mother to do all she can for her children, especially Eden.
"She's awesome," Adam said of Elisha. "She's the one that deserves all the credit."
Eden was born Nov. 11, 2010, and was immediately embraced by the Lynn family.
Elisha said there was nothing different about her pregnancy and there were no concerns at Eden's birth.
A month later, Eden began being fussy. Fussiness led to a piercing shriek.
"It was almost an 'I'm on fire' scream," Elisha said.
Eden's parents knew something wasn't right, so they sought answers from physicians.
Doctors at first thought that Eden was just developing slowly, but the answer didn't quite fit the symptoms. Finally, an MRI at Riley Hospital for Children at IU Health in Indianapolis, pinpointed the problem. Eden is one of the 1-in-25,000 children who have Dandy-Walker Syndrome.
Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. It particularly affects the part of the brain that controls movement, but can include fluid pressure on the brain, progressive enlargement of the skull and cyst formation near the internal base of the skull, according to the Dandy-Walker Alliance.
The syndrome often goes hand-in-hand with hydrocephalus. Longevity and quality of life depend on the severity of the syndrome and associated malformations.
Eden has a cyst in her skull that causes her Dandy-Walker Syndrome. She does not have a fluid build-up or hydrocephalus.
Because limited research is being done on the syndrome, doctors and the Internet frequently don't offer much information or a positive prognosis.
"I was so shocked I didn't even have questions to ask the doctor," Elisha said.
It took Elisha about a week to absorb the information.
"You grieve your child, for the life I wanted her to have," she said.
In the interest of giving her daughter the best life she could have, Elisha immediately became Eden's champion.
"You have to advocate for her," Elisha said. "You have to question them (doctors). Why? How is it going to help?"
Elisha found hope through the Dandy-Walker Alliance. Its website, www.dandy-walker.org , offered information and advice from other parents that was uplifting to her because it showed that many children with Dandy-Walker Syndrome can have happy, healthy lives.
Hope and help also have come from the First Steps early intervention program, which sends a physical therapist and a developmental therapist to the Nadlers' home. They travel to Reid Hospital in Richmond for occupational therapy.
Jo Poole, a physical therapist for 25 years, also had never heard of Dandy-Walker Syndrome until about a year and a half ago, when she was contracted to work with a boy who had the syndrome and who was recovering from heart surgery.
"There's very little information out there," Poole said. "Her (Eden's) brain doesn't tell her muscles how to work in the same way ours do."
"You can see the wheels turning," Elisha said. "She has to think about what she has to do to get in a certain position. I had no clue. You don't really notice how your body does things automatically."
A year ago when Poole began working with Eden, she couldn't hold her head up. Elisha called Eden "a limp baby."
"I remember our first session well," Poole said recently. "If you laid her on her tummy, she couldn't lift her head up. She needed total support for everything.
"We put a towel under her chest to support her, got her arms in the right position and then she could do it," Poole said.
"It was almost like magic," Elisha recalls.
Working together Poole and the Nadlers have helped Eden.
"Now she's crawling and pulling up to stand, sidestepping. We're working with walking, trying to do it with a walker," Poole said.
Between his work and a recent illness, a blood clot in his leg, Adam said he does all he can to stay involved in Eden's therapy,
but Elisha is the "team leader" who organizes the whole family to help Eden.
"She is the best parent," Poole said. "One of the things I love working with Eden is any suggestion I make, they follow through. The whole family does wonderful with Eden. They practice. Therapy isn't just like one hour a week."
Poole said that if she brings in a toy that really helps Eden, Elisha searches garage sales and discount stores to find something similar for daily use.
"Every single week, she (Eden) is doing something different, something new," Poole said.
Adam said the family has meetings about the therapy they need to do with Eden.
"I think it's pulled us together," Adam said, and Elisha agrees.
Eden's brothers and sister often help her practice the proper body movement presented during physical therapy.
"One hour a week is not going to cut it. We've got to push her hard," Elisha said.
She exercises Poole has Eden practicing will help her to stand on her own and walks.
"I have no doubt that she will," Elisha said. "It's just all on Eden time."
Elisha babysits a toddler who is about a week younger than Eden and she compares their progress. Eden, she said, is six to nine months behind the boy. However, when the two play together, he motivates Eden.
"She's slowly expanding herself," Elisha said.
Now, each time Eden reaches a milestone, everyone in the family celebrates.
"That's the biggest miracle you can realize. Your heart just fills and just busts," Elisha said.
Adam said that it has been an interesting roller-coaster ride, but given what they first heard would be Eden's prognosis and what she is able to do today, it's pretty awesome.
"We don't know what's around the corner," Elisha said. "Now anything is possible."
Information from: Palladium-Item, http://www.pal-item.com
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