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Tot diagnosed with rare, life-altering disease

2.7 from 3 votes
Wednesday, November 18, 2009

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What seemed like an average toddler's tumble has turned into a life-altering ordeal for Belleville's Trinity Bailey-Brown.

Trinity's mother Amy Bailey, 23, recalled the day the 14-month-old's limbs simply stopped working in mid-stride.

"She was just running around one morning and then she fell, and she couldn't get up again. She was like a rag doll, basically."

That was Sept. 16. Trinity has since been in constant medical or rehabilitative care.

She's been diagnosed with transverse myelitis, a rare illness in which a severe spinal cord injury causes loss of motor control and sensation below the level of the injury.

But, as doctors told the toddler's family, an MRI scan showed virtually all of Trinity's spinal cord appeared to be abnormal, with the injury most severe at her lower neck. That left her paralyzed and unable to perceive temperature or touch below her neck.

"All I wanted to do was cry," said Bailey, but added she has tried to be strong for her daughter and not show her own grief in front of Trinity.

"She wants to move; she just can't," Bailey said. "You can see she's frustrated. It's hard."

There is no real treatment for the disorder -- and it's not known why Trinity was affected by it --

though some children do improve over time.

Trinity showed virtually no improvement during her first month in Kingston General Hospital, but last month she regained movement in her arm. Bailey said Trinity would "move it all the time just to show off."

Trinity was flown two weeks ago to Toronto's Bloorview Kids Rehab. Staff there said they haven't yet had enough time with her to offer a new prognosis, but that any recovery will clearly take much time.

"It's a little bit early to say how many months she'll be here," occupational therapist Dana Driesman said Tuesday. "She has a long road of rehabilitation ahead of her.

"She continues to have some limitations. She has improved hand function which is wonderful to see and her head and trunk motion are improving. She's a very motivated and very determined little girl. That certainly works in her favour."

Family members have kept close watch over their little girl, but it has been costly.

Bailey had to give up her job at Belleville's NCO call centre to stay with her daughter. The family relies upon the wages of her fiancée, Joe Wood, 25.

"We're basically almost bankrupt," Bailey said. "The bills keep coming and there's only one income."

Theda Wood -- Joe's mother -- said Tuesday Trinity's mood has brightened since she regained some motion of her arms. She can move each one but not bend them, and no longer requires a feeding tube.

She's having a lot of therapy, morning and afternoon," Wood said. "She seems to be getting stronger. Her eyes just light up if she can do something. It's just precious.

"They did say we can take her home for Christmas for a few days."

It's not yet known when Trinity might be released from care and what sort of supports might be needed. One doctor has said she may need a specialized wheelchair and renovations to her home.

Therapist Driesman said it is too early to speculate.

"Trinity may require several pieces of equipment that are not covered by our (Ontario) health card," she said.

Bailey said she's holding up "as good as I can."

"I haven't had a meltdown," she said with a tired-sounding laugh.

Family and friends have launched Trinity's Hope, an effort to raise funds to offset costs related to Trinity's care. They sold baking at the Bay View Mall last week, set up a bank account for donations and, on Dec. 5, will hold a benefit day at The Village Pump in Rossmore.

The Dec. 5 benefit includes a family-oriented afternoon including an as-yet unannounced children's performer and photos with Santa between 3 p. m. and 6 p. m. Starting at 7 p. m. there will be live entertainment for adults and a silent auction. Tickets are $10 for adults and $5 for kids. For details write to

Donations can be made at any CIBC branch by using account number 06942 8327491.

© 2009 , Sun Media

Author: By Luke Hendry
Source: The Intelligencer
2.7 from 3 votes
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