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Teen sets sight on treatment

One piece at a time: Jody Hanna works on a jigsaw puzzle while sitting with her mother Alicia at the kitchen table. - James Murray
One piece at a time: Jody Hanna works on a jigsaw puzzle while sitting with her mother Alicia at the kitchen table.
— image credit: James Murray

Like other 17 year olds, Jody Hanna dreams of getting her driver’s licence.

Blind since birth, the young teen may just get the chance to realize that dream, if she get can access treatment in Phoenix, Ariz.

While Jody’s eyes looked normal, when she was about three months old, her family noticed she was not making eye contact.

An electroencephalogram (EEG) at Children’s Hospital in Vancouver confirmed a cat scan which showed that while Jody did have optic nerves, they were undeveloped – a condition known as bilateral optic nerve hypoplasia.

“It showed signs of her seeing something, yet they didn’t know what that was, and we wouldn’t know until she was able to tell us what she was seeing,” says her mom Alicia. “If the sun was really bright, she would turn away or squint, but she never said if she could see shapes or colours.”

Because her optic nerves are under-developed, the message doesn’t go to the brain telling the pupils to dilate, so when they’re wide open, light floods in allowing her to distinguish dark, light, shadows, but no colour.

“She can’t even tell you what she sees, but on a cold winter day when the sun is shining, she can tell you it’s bright,” says Alicia. “If she’s laying in bed and the light is on, and I am standing above her, she is seeing things, but nothing definite enough to describe.”

About 18 months ago, Jody’s dad, Owen, saw a program on television describing stem cell treatment in China that could restore sight.

Alicia followed up on the Internet but didn’t know how to proceed.  She put the idea on the back burner until a chance conversation on a local beach with Lisa Devries, who offered to do some computer-based searching of her own.

Subsequently, Jody’s medical data was sent to several medical facilities that for one reason or another were not able to provide the treatment she needs.

Also an issue is Jody’s age.

“It would be better if she was younger and still growing, but Jody was 15 and coming to the end of her growing period,” says Alicia.

But good news did arrive from the Stem Cell Rejuvenation Center in Phoenix.

Not only have doctors approved Jody as a candidate for treatment, she has been given assurances that she can reasonably anticipate gaining some or possibly total vision.

The catch is, Jody and her family need help raising $20,000 for the procedure.

Once $10,000 has been raised, the family can book Jody’s procedure with an anticipated wait time of about three months.

The procedure will involve removing some of Jody’s own stem cells for placement behind the eyes next to the optic nerves in order to encourage them to grow.

“It only takes a minute to inject the stem cells and it’s non-invasive,” Alicia says. “And it will prevent any further deterioration of her eyes and later-in-life issues such as glaucoma or macular degeneration.”

Alicia agrees she is extremely excited by the prospect of sight for Jody, particularly because there are no jobs she can perform.

That means, that when she turns 18 in April, she will become  reliant on the government for living expenses.

Alicia has had no response from letters she has written to the government asking for financial support for the treatment in Phoenix. She cannot understand why they are willing to pay food and housing costs for the rest of her life rather than giving her the opportunity to become an independent, tax-paying citizen, who doesn’t have to rely on the government.

As to the outcome of fundraising and the treatment, Alicia is philosophical.

“I’m very excited, but at same time I don’t want to get my hopes up,” she says. “We’ve lived with Jody with this condition for a long time. She’s a very happy-go-lucky individual and if it doesn’t work we’re OK with that.”

With a poignant pause, Alicia reflects on Jody’s feelings about seeing one day.

“All she says to me is ‘Mom, maybe one day I’ll be able to drive.’”

This stem cell treatment is Jody’s only hope for vision – vision the teen says would allow her to see the world for the first time.

“I’m happy that I might be able to see the flowers, see the stars, see my aunts and uncles...”

Donations for Jody’s treatment may be made at Scotiabank at 391 Hudson Ave. (PO Box 490) to account #30320-0309184.

 

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