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Wednesday, July 16, 2008

Article published in the Temple Terrace/University Beacon

Temple Terrace infant Megan finds hope in new therapy

Doctor after doctor told Terri Garrett that her little girl had a severe hearing disability and that she might be blind. IfTerri had listened to the doctors and not pushed as she had, things might be different.

Her soon-to-be 21-month-old daughter, Megan, might not have fmally discovered her hands, put weight on her legs, or said "Hi!" to her 12-year-old brother who has never heard her speak
before.

The doctors didn't listen when Terri mentioned the seizure-like behavior little Megan was exhibiting. Megan didn't have the seizures in front of the doctors - they didn't have proof.

They told her she was hysterical. That she was overreacting.

"I swear you just get dismissed," Terri said.

She finally caught Megan's seizures on tape and took it to a neurologist - finally some hope. The doctor believed her. But the doctor didn't know what was causing it - or how to treat it.

Terri was told that her baby girl wouldn't live to see her second birthday. Megan turned 21 months on July 17th.

Terri was told she should just take little Megan home and make her comfortable.

Terri knew she couldn't do that. There had to be more.

Coming home from the upteenth doctor's visit, Terri retrieved the mail and ran across a magazine article about Shannon and Grace Kenitz.

"It was like reading my life,"Terri said of reading about 9-year-old Grace, who doctors said wouldn't celebrate her second birthday.

Grace is diagnosed with the same Mitochondrial disease that Megan has - Cytochrome C Oxidase Deficiency Complex IV..

Grace's mother also refused to listen to the doctors, who told her that she should take Grace home and make her comfortable.

Shannon,who lives in Wisconsin, found a treatment that seems to work wonders for Grace. It's the same treatment Terri is getting for Megan. It's called Hyperbaric Oxygen Therapy.
Essentially, it.'s a chamber in which the patient stays for a period of time - in some cases wearing a hood over the head - and is immersed in high-pressure 100 percent oxygen.

For those with Mitochondrial Disease, the increased oxygen seems to help stimulate the patient's mitochondria to produce the energy it is supposed to. "Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth", according to the United Mitochondrial Disease Foundation. "When they fail, less and less energy is generated within the cell."

The Garretts talked it over and decided to give the controversial treatment a go despite its nearly $10,000 price tag. The Food and Drug Administration has not approved HBOT for the treatment of Mitochondrial Disease and many doctors dismiss it as a waste of money.

"What do I have left?"Terri remembers asking herself of the options for Megan.

Though the Garretts have health insurance, the policy does not cover the HBOT treatments; meaning the family must come up with approximately $10,000 each time Megan goes to Wisconsin.

Megan and Terri are currently in Wisconsin, finishing up their first round of 40 HBOT sessions. They are expected back to their Temple Terrace home this week.

OnJuly 4, Terri's husband and sons came to Wisconsin to visit them and to meet Shannon and Grace and another family from Tennessee dealing with the same illness.

That's when Megan startled her eldest brother by saying "Hi!"

She never spoke before the HBOT sessions. Megan also never noticed her hands before. Or looked at her mother before; "It's like the haze is gone,"Terri said, her voice cracking with emotion as she recounts the struggle her daughter has gone through.

Megan is now reaching for things with her hands. She's also discovered how tasty they are as she constantly slips them into her mouth.

"You cannot tell me it is not in conjunction with hyperbaric" Terri said of her daughter's progress. Megan has also been undergoing physical and occupational therapy to build up her muscles and coordination. She's able to stand up with assistance and put weight on her legs.

Along with the HBOT treatment, Megan has also had to have a feeding tube at night to fulfill her nutritional needs - since her cells produce only 5O percent of the energy they're supposed to.

"She's finally grown," Terri said. "She's gained some weight. She's coming alive.".

Before the treatments, Terri said her daughter was "a brain stuck inside a body that doesn't work." But now that she's undergone nearly 40 HBOT sessions, Megan is starting to come around and take notice of her surroundings.

Terri is planning on taking Megan back to the Wisconsin facility next month or early September for another round of sessions.

The treatment, the cost of travel, lodging, food and therapy will run the family in the neighborhood of $10,000 - again . . .

On top of that, the Garretts want to buy a home system for Megan that she can use in between major treatments inWisconsin. A home system is expected to cost approximately $20,000 after getting all the other periphery equipment needed.

"We're 'going to be living in a box,"Terri said, if the family doesn't find some way to offset the medical and travel expenses. She would like to hold a fundraiser; but hasn't had the time to think it through yet.

How you can help/where to learn more:

To offersuggestions or' financial support, e-mail Terri Garrett at terrigarrett7@gmail.com.

Go to Megan Garrett's Caring Bridge Web site to learn more about her condition, the treatment she's receiving and about her family. The site is located at http://www.caringbridge.org/visit/megangarrett.

You can also go to the United Mitochondrial Disease Foundation website at http://www.umdf.org.

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