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Monday, July 28, 2008

A much needed family vacation

We went on a family vacation on July 19th and got back home last night. James and Ryan could not have been happier to have Meg around jamming up their action.

The most noticeable difference I can see is Meg's vision. I also THINK she is hearing better - or she is processing what she was already hearing???? So hard to tell, but something is going on new in that department.

Her ability to stay awake is improved which is good because we can get more aggressive with PT and hopefully get her sitting up. I imagine a view of the world from your back is really boring - especially now that she has seen it from an upward view.

Pat and I are focusing on more HBOT. I also got a referral from my Uncle Charlie in Melbourne about Childrens Hospital of Philadelphia which is interesting because I met a surgeon from Philly coming home from Wisconsin and then today the pharmacist at Publix (Mike)(who handles A LOT of stuff for Megan) & I were talking and his nephew has a very rare genetic disease which is different than Megs, but has some very similar features is being handled there and I have his brothers phone number and doctors name to contact for the metabolic, GI and immune system issues. Something keeps pointing there for some medical follow up.

We are going to be world travelers soon. Thinking I should just learn how to fly a plane, or get a tour bus????

Thanks to everyone for your support. Some of you who know Wendy (my sister in law) generously donated money to a Bank of America account for Megan. Words cant express our appreciation to Wendy for taking the time and energy to arrange it in the middle of her chaos and to all of you who pitched in for the benefit of my little girl.

Thanks for sharing our hopes and dreams. This is the kind of stuff that renews our faith and turns these dreams into realities.

Love To All -

The Garrett Family

Terri, Pat, James, Ryan, and MEGAN

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

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

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

You can also go to the United Mitochondrial Disease Foundation website at

Sunday, July 13, 2008

Taken off the list for stem cell reinfusion

I heard from Duke University and Meg has been taken off the list for stem cell reinfusion. They said that she is not a candidate with all of her medical problems. I was not too shocked to hear that. I kind of expected it after our trip to New York in May.

We will keep moving ahead on this path and see where it goes!

Saturday, July 12, 2008

We made it home today.

It is good to be here but I feel sad to have left Wisconsin also. It felt so good to finally be able to do something for Meg other than give her medicine for symptoms.

We are going to talk about a return trip for September and we are working on the home chamber - Thanks to all of the emails and good wishes.

Friday, July 11, 2008

The first set of hyperbaric treatments

It has been a while since I have had time to update, but better late than never.

We got to Wisconsin on June 16th and started treatments on the 17th. The first thing I noticed is how Meg's vision got noticeably better and her eyes got very clear and bright. She seems to be tracking most of the time and I think she can see farther distances than before.

Her energy level is unbelievable. She is not tiring so easy and has so much more stamina to accomplish therapy. Also mentally she is much more present. Physically she has finally discovered she has hands - I am not sure she knows what they do yet, but she knows they are there and I am guessing she likes the way they taste.

She really is enjoying getting her hands in her mouth when she eats and then rubbing it into her hair......its all good - I have been praying to be able to be frustrated with little things like this. I can't wait for her to tell us NO! and then run away like a bad little girl - it is going to make me so happy.

I am seeing so many little things, but they all add up to so much. From what I have learned this is typical of the first 40 treatments, The next two sets of 40 should knock us off our feet. We come home on the 17th and I have to start to make arrangements for 40 more in conjunction with the intense physical therapy she is getting. That is going to be a challenge to have to leave the family again. I miss them and I know they miss us too.

It is hard but we have pulled together for Meg. James and Ryan could not get enough of her when they came out to see us over the 4th of July. James said she said Hi to him and he was right.

On Tuesday, July 8th Meg busted out a - "HI". It was crystal clear and everyone in the therapy room was silent - I think in shock for a moment - then it was pure excitement. She said it a couple of times today too. Everyone here is great.

I have came accross some genuine people here who know where I have been as they have been or are there now and are so supportive. It has been perfect for us.

Mayci is another little girl treating here now. She is 7 and has mitochondrial disease. Her muscle biopsy showed the same as Megs - Coenzyme C Oxidase Deficiency. Check out her website if you can @

Shannon is Grace's Mom (the article I read that got me here) and she has the biggest heart. Grace is amazing and so funny. James and Ryan really enjoyed her and were happy to hope that Megan will be able to progress as Grace has and start having some fun for a change.

By the way, Meg is smiling a lot more - she thinks she is funny too! Her temper is still pretty fierce, but she comes by that honest..... must be from Daddy (we have to blame someone). I cant say thanks enough to everyone for all of your help and support.

Thanks especially for all your prayers - God heard us. I want to thank Him the most for everything he has given us and for enabling us to have a baby as sweet as Meg and giving us the abilities to care for her. It has broadened our life so much and changed it forever for our ENTIRE family and many of our friends.

Tuesday, July 1, 2008

Classic Meg and Ryan interaction

Daddy's little girl...

Meg at the beach - Spring Break 08

Beauty takes pain

Halloween fairy costume does not look so comfortable, but it sure does look good. Beauty takes pain.

Meg's 1st birthday-on Mommy's lap

James amazed with his baby sister

James amazed with his baby sister the day she was born & he still looks at her this way. I love it.

Megs favorite spot. Mommy likes it too.

Standing up! Wow!

Therapy - bearing weight on her arms!!

Hyberbaric Oxygen Therapy - HBOT