| Fighting like girls against Rett syndrome |
By: SUZANNE ROOK, Managing Editor
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Posted: Friday, October 23, 2009 10:46 pm
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So uncommon was now 22-month-old Natalie McCausland’s disorder that even the doctor wasn’t familiar with it: Rett syndrome, a neuro-developmental disorder seen mostly in girls and caused by a mutation in the X chromosome.
As Natalie missed one developmental milestone after another, Dundas residents Jill McCausland and her husband, Eli, told themselves that their baby was content. But it was hard not to compare Natalie’s development with that of their 5-year-old, Zoe. Reassured by their doctor that the delays weren’t uncommon, the McCauslands bided their time.
But she didn’t improve. Nearing a year and a half, Natalie still wasn’t crawling. When they tried to sit her up, she fell over like a rag doll.
Rett syndrome, which can appear to be autism, cerebral palsy or developmental delay, can vary from mild to severe. Cognitive, sensory, emotional, motor and autonomic function, including learning, speech, sensory sensations, mood, movement, breathing, cardiac function, chewing, swallowing and digestion can be affected, according to the International Rett Syndrome Foundation.
Jill never imagined her daughter might never walk or talk. A few months ago, Nattie would say a few words, but has regressed. She grinds her teeth almost constantly and puts everything into her mouth.
Like the physical therapy that has rebuilt some of Natalie’s arm strength, the McCauslands are working to reconstruct their lives. And so far, says Jill, they’re doing OK.
“This is our journey, this is what we have to do,” she says firmly.
That resolve, Jill said, has come from the overwhelming support — from friends, co-workers and family — and from people she has never even met.
Days after Natalie’s diagnosis, Jill hit the Internet, deciding there had to be Rett syndrome support groups. Minutes after sending out a note, Jill got a message. The person on the other end was a real lifeline, she said, telling Jill not to give in to low expectations for Nattie, and that the writer’s daughter at 8 was walking.
“It was amazing,” said Jill, “I thought: ‘I’m not alone.” Soon Jill connected with a Minnesota support group and a family in New Prague.
She and Eli quickly got involved in the cause. Eli knows about the numbers and the research, while Jill works other angles.
On Tuesday, Jill’s co-workers at all four Community Resource Bank locations wore pink “Fight like a girl” T-shirts from IRSF with their jeans in honor of Natalie. Each of them had to “pay” to wear jeans and spent $15 to purchase a shirt.
The company, said Jill, allowed them to take donations for IRSF, and they took in over $600. It’s not about the money, said Jill, it’s about awareness.
And while Nattie’s diagnosis has changed the McCauslands in many ways, they say it has made them better parents.
“It’s made me appreciate the little things,” said Eli, describing his elation when Natalie learned to use a straw.
And while everything Natalie accomplishes is a feat to be celebrated, he said, so are all the things Zoe does that come easily to the 5-year-old.
“Those are real miracles, too,” he said.
— Reach Suzanne Rook at srook@northfieldnews.com or 507-645-1113. |
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