Therapy offers hope for Samburg girl, family
By: By Chris Menees, Messenger Staff Reporter
Messenger Staff Reporter
Nine-year-old Marli Hogg has a lot of catching up to do with younger sister Mayci.
She already has big plans for 7-year-old Mayci — who was born with a rare mitochondrial disorder that has filled the first years of her young life with doctor visits, numerous medications and little hope for the future.
Now, Mayci has been offered new hope in the form of Hyperbaric Oxygen Therapy, which she will begin Monday at a state-of-the-art treatment facility in Wisconsin.
Big sister Marli and the girls’ parents, Richard and Kristi (Roberson) Hogg of Samburg, are excited about the prospect.
“This is the only hope that we have gotten for anything in probably three or four years,” Mrs. Hogg said. “We go every year to Atlanta to (Mayci’s) mitochondrial specialist and they just say ‘Well, you’re being a good mom and you’re maintaining her’ and that’s about it. But there’s no cures, there’s no hope. The medications always stay the same. There’s nothing that’s been offered and this is the only thing that I have found to be something of a chance for her.”
Mitochondrial diseases are defined as a group of disorders relating to the mitochondria, the organelles that are the “powerhouses” of the eukaryotic cells that comprise higher-order lifeforms, including humans. The mitochondria convert the energy of food molecules into the ATP that powers most cell functions.
Mitochondrial diseases comprise those disorders that in one way or another affect the function of the mitochondria and/or are due to mitochondrial DNA. Mitochondrial diseases take on unique characteristics both because of the way the diseases are often inherited and because mitochondria are so critical to cell function.
As a result of her disorder, Mayci has low vision, cannot walk or talk and is unable to communicate with her family. She has had treatment for cataracts and a severe seizure disorder that has worsened, had a feeding tube placed and had many hospital visits because of viral infections and other types of sickness.
Mrs. Hogg said Mayci’s seizures have become more severe over the years and they have tried every possible medication to control them.
“The last visit we had (with a neurologist in Memphis), Mayci had had strep. He told us he would keep her as comfortable as he could but eventually her seizures were going to outplay her body and that it would just be that we would have a seizure that would probably not stop and we would go from there and there was nothing he could offer her, no procedures … We are maxed out on our meds and there was no hope or anything he could offer us.
“She’s even on one (medication) from Canada right now that’s not covered by insurance that we’re paying, so we’re at the end of our rope on anything and that’s why we’re so excited about the Hyperbaric Therapy.”
Big sister Marli adds, “And if she’ll get treated or cured for her disease, hopefully I’ll have a sister that I can run around and play with.”
“That’s what our goal is. Absolutely,” Mrs. Hogg said.
A glimmer of hope
Mrs. Hogg said about two weeks ago, a cover story in Exceptional Parent magazine caught the eye of Mayci’s physical therapist, Kellee McBride. The cover photo showed a little girl who bore a striking resemblance to Mayci.
“She couldn’t believe the coincidence of how Mayci looked like her, plus the girl ended up having a mitochondrial disorder which is the same type that Mayci has,” Mrs. Hogg said. “So she read it and got all excited about it because it was a different type of therapy that might be able to help.”
The therapist shared the magazine with Mrs. Hogg on a recent Monday.
Within two days, she had called the Wisconsin Integrative Hyperbaric Center and by the Friday of that week, the Hoggs were in Wisconsin to see if they could gain approval for Mayci to have therapy.
“They said she’d be a great candidate,” Mrs. Hogg said. “And we were able to be seen on that Friday. God just worked it out for us to be able to see everything fall into place for us to get to go.”
During their visit, the Hoggs learned that the Integrative Hyperbaric Center — known as “A Place of Grace” — was created because of a little girl named Grace whose life was saved through Hyperbaric Oxygen Therapy. Until the age of three, Grace’s mitochondrial disorder meant that life was mainly spent in hospitals. In effect, she was blind, failing to thrive and fed through a feeding tube. Plus, much like Mayci, she suffered from seizures, infantile spasms and underwent several surgical procedures.
Hyperbaric medicine was Grace’s last choice — and it proved to be the key in her successful recovery and return to her family. The Wisconsin facility was the vision of Grace’s mother, according to Mrs. Hogg.
“She had a vision of what she wanted for her daughter and because she was doing so well in her treatments, the International Hyperbaric Association kind of made Grace their poster child,” she said. “She got to get grants and funding and they’ve made a facility where Grace lives.”
Hyperbaric Oxygen Therapy is a specialized therapy that uses an increase in atmospheric pressure to allow the body to incorporate more oxygen into blood cells, blood plasma, cerebral-spinal fluid and other body fluids.
Mrs. Hogg said the therapy has been around for years and has been used for deep sea divers who surface too quickly, as well as for diabetic wound care and burn patients. She said a Florida neurologist started doing trials in the therapy’s effect on children, finding considerable hope for children with autism, and it has been found to help people with multiple sclerosis, stroke victims and even those who suffer from migraines.
In Wisconsin, Mayci will do a one-hour session in the hyperbaric oxygen chamber each morning, followed by four hours of intense therapy and then another one-hour session in the oxygen chamber in the afternoon. It has been recommended that Mayci start with two months of the treatment.
Family will be allowed into the large submarine-like chamber with Mayci, who will wear a special hood to receive the treatment. She will be given pure oxygen, which Mrs. Hogg explained is 200 percent pure oxygen vs. the 21 percent received by just breathing air.
“Based on examples, like Grace, the little girl we saw (at the center), she was completely blind and after 10 sessions she got her vision,” Mrs. Hogg said. “They don’t guarantee anything. Every child is uniquely different. It’s the good Lord and oxygen mixed together is what I’m going to call it.”
Mrs. Hogg said the intense physical therapy, which will include a special suit and some innovative techniques for Mayci, is necessary once the children who undergo Hyperbaric Oxygen Therapy “start waking up and things start happening for them.” She said the physical therapy is needed “in order to start their muscles working just because their mind’s kicking in.”
Mrs. Hogg said Grace has been receiving ongoing treatment for about 4 1/2 years and has progressed considerably. Mayci will also have to maintain treatment. In fact, the Hoggs have been told that after the initial two months, they should expect to buy a home chamber — which starts at a cost of $21,000 — in order to continue Mayci’s treatment at home.
Journey of hope
The Hoggs will leave Sunday in order to be in Wisconsin on Monday for Mayci’s first treatment. The first week, Mayci will be accompanied by both of her parents and her sister. As treatment progresses, she will also be joined at various times by her grandparents, David and Donna Roberson, who are Mrs. Hogg’s parents.
Mayci and Marli are also the granddaughters of Lois Hogg and the late Ed Hogg of Samburg. Plus, Mayci has a sort of “second mama,” according to Mrs. Hogg, in the form of personal assistant Nona Fleming, whose services are funded through the State Department of Mental Retardation Services.
Marli believes that little sister Mayci knows something wonderful is about to happen in her life. She said Mayci seems to be more active since their recent visit to the Wisconsin facility, where Mayci and her family were actually allowed to sit in the oxygen chamber where the therapy will be conducted.
“Maybe the next time you come you’ll have to be doing a story in the newspaper about how well she’s improved and Mama will have to be fussin’ at us to quiet down so you can do it,” Marli told The Messenger.
“She’s long. She’s got some long legs. I know when she learns how to walk, she’ll put those legs to use. I’m puttin’ her in gymnastics, ’cause she can do some things that I don’t think anybody could do,” the proud big sister added.
“She’s got her hopes up,” Mrs. Hogg said. “We’re so excited.”
Expecting a miracle
Grace and her “Place of Grace” have indeed given Mayci’s entire family new hope for the future. They returned home from their initial visit with photos of Grace and inspiration from what’s happened in her life, which includes receiving her sight, the cessation of seizures and the ability to walk and talk.
“Grace should have been dead. She has one of the rarest mitochondrial disorders that there is and Grace is one of five children that has this rare disorder and she’s the only one living,” Mrs. Hogg said. “All the other kids have died. She’s now nine years old. To see her is inspiring for us. That’s our goal for Mayci.
“I’m very, very excited. I cannot wait to get there. I’m just so excited,” she said.
“We’re expecting a miracle,” Ms. Fleming added.
“And miracles have already happened with the response that everybody in West Tennessee has given us,” Mrs. Hogg said.
The Hoggs have been humbled by the offers of help from throughout West Tennessee and Mrs. Hogg hopes to be able to give something back to others in need through Mayci’s recently launched Web site: www.west tennesseecares.com. It details her battle with the mitochondrial disorder and offers several links that Mrs. Hogg hopes will benefit others who have genetic disorders or autism.
Plus, Mrs. Hogg plans to keep the site updated with information and photos as Mayci’s treatment progresses.
“I want to make it where it’s informational for other people. If I can help others with genetic disorders or autism, I want to be able to help other kids like we’ve been given this opportunity,” she said.
“This is the only hope we’ve got. Nothing else has been offered to us and I’m not ready to give up on this baby. Me or my husband are not ready to give up on this baby.”
Staff Reporter Chris Menees may be contacted by e-mail at firstname.lastname@example.org.
Published in The Messenger 6.5.08
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