Special Assignment: A Mother's Mission
Special Assignment: A Mother's Mission Save Email Print
Reporter: Leigh Mills
Email Address: lmills@nbc15.com

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"Gracin was born on March the 8th, 2005," recalls her mother, Stacey Davidson, "She had what they call dysmorphic features, a weak cry, and rocker bottom feet.

"They [doctors] came in and said that she is a chromosomal baby, and that they don't know what chromosome or how long she's going to live."

It was the beginning of what would become the battle of her life.

Gracin started having seizures, she couldn't eat and at 15 days old she went into congestive heart failure.

"The pediatrician told me that God makes some babies angels and that my baby was an angel and that she was not going to live to six months old and probably wouldn't live until three months old," remembers Davidson, "That was the hardest part."

But Gracin survived and was eventually diagnosed with a genetic disorder called 1p36 deletion syndrome.

"It means that there's a piece missing in her chromosome," Davidson explains, "Had the 1p36.3 that is missing attached to like the 15th chromosome, she would be a typical child."

Gracin began standard therapy as her parents hoped to minimize her developmental delays.

Three years later, Gracin progresses slowly. She can't walk or talk or even crawl.

Stacey began looking for alternatives and came across a magazine article on a little Wisconsin girl, who underwent an experimental therapy with great success.

Grace Kenitz is 9 years old. She suffers from a mitochondrial disorder called mitochondrial cytochrome c reductase deficiency.

They have similar names and similar stories.

"Grace was being kept alive by her feeding tube," recalls Grace's mother, Shannon Kenitz.

Grace spent the first three years of her life in the hospital, with her mother by her side.

"Her life was basically just being in a hospital hooked up to machines. She was on over 42 different medications," says Kenitz, "During those first few years of Grace's life, she had absolutely no idea that I was her mom. I mean, she didn't look at me because she was blind, she didn't know that we loved her because she didn't comprehend anything."

Grace's diagnosis was a shock to Kenitz.

"It was a diagnosis of a terminal illness and at that time only four other kids had ever been cited with that type of mitochondrial disorder," recalls Kenitz, "And so the physicians told us to take Grace home and spend time with her as a family and to let her go."

But Kenitz couldn't do it.

It was her fear of Grace dying that pushed her into the world of alternative medicine.

"I needed to know that I did everything in my life to help Grace," she says as tears stream down her face, "Because if I had that comfort of knowing that I did everything, then it may have been easier for me to let her die."

Kenitz and her daughter traveled to Florida to try hyperbaric oxygen therapy.

"My daughter completely changed in that first year of doing hyperbarics," she says with a smile.

The therapy, also known as H-BOT, is still considered experimental.

Here's how it works: patients sit in a pressurized chamber for about an hour. They wear a mask and breathe in 100% oxygen.

"You're getting increased oxygenation into the blood and you're getting increased oxygenation out into other areas of the brain that might not be seeing enough oxygen flow," explains Doctor Kyle VanDyke, "You're also having decreased inflammation in the brain."

VanDyke was a skeptic himself until a family member participated in a pilot study.

"My personal experience is with my son, who was nonverbal before hyperbarics [and] had horrendous GI [gastrointestinal] problems with his autism," says VanDyke, "He had tremendous improvements when we did hyperbarics and that's why got me involved in it initially."

Studies are ongoing, but VanDyke says the therapy may be helpful in treating a number of neurologic conditions Including autism, stroke, cerebral palsy, mitochondrial disorders, multiple sclerosis and parkinson's, as well as chronic fatigue and injuries.

But it's not cheap. Most insurance companies won't cover it because it's an alternative therapy.

In Grace's case, Kenitz began to fundraise furiously.

"I would literally go to Florida, treat Grace, come back, raise more money, go to Florida, treat her, come back," she says.

Meanwhile, Grace's story gained national attention, including an appearance on The Montel Williams Show.

Families sent Kenitz hundreds of letters a month asking for advice, so she decided to do something about it.

One year later, she opened A Place of Grace in Fitchburg as an integrative hyperbaric center.

"As moms we were running from hyperbarics to PT to OT to speech to vision to doctors appointments, some of us marriage counseling," Kenitz explains, "I wanted everything in one building."

Grace continued to improve. We began following her story in late 2004, the year she started kindergarten.

"My dream was fulfilled last Tuesday when Grace came to school and had her own desk and cubbie with her name on it," said Kenitz in an interview in December of 2004.

One year later she surprised her mom and took her first steps at the Dane County Regional Airport, as Kenitz returned home from a two week business trip.

Today, Grace is a fourth grader. She works daily with lifestyle and speech therapists. And she continues H-BOT in their home and at the center.

A country song now bears her name, and they've sold the movie rights to Grace's story.

"In the last two years our lives have changed so much that I do know that Grace was given to me for the mere fact that I wasn't going to take no for an answer," says Kenitz as she begins to tear up, "People look at Grace and they see where she was and they see where she is now and I want that so much for every family that walks through that door."

Families like the Davidsons, who raised $9,000 dollars and traveled here from Tennessee to give H-BOT a try.

Davidson says, "The first day when we walked in and did our second treatment and Grace had just gotten out of her chamber and walked past and said, 'Hi!' I mean, it gave me chills."

Remember, Gracin couldn't even sit up when they arrived at the center.

"She is three," says Davidson, "Just Monday after we did the two hours of physical therapy, she sat for about a minute alone."

Gracin spends an hour in the chamber twice a day and does ten hours of physical therapy a week.

"I want to catch her up to where she's supposed to be," says Davidson, "She has so much to give and offer and so much life to live and I think this is going to help her quality of life."

After four weeks, they hit a milestone.

"She can sit anywhere from three to seven minutes," says Davidson triumphantly, "We've been on the verge of sitting for two years and for her to actually have the strength to sit up, it's just been a wonderful experience all around for us.

"I've never heard her say, 'Mommy, I love you.' She's never walked to me. That will make all of this worth it."
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The Davidsons are already fundraising for another trip to Wisconsin next spring.

Meanwhile, a study is pending publication that could give more credibility to the therapy in the medical community.

It's a randomized, double-blind, placebo-controlled study, which VanDyke says is the gold standard in medicine.

As for the movie based on Grace's life, there's no word on when that will be completed.

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Posted by: Dr. Rebecca McCall Location: Charlotte, NC on Feb 8, 2009 at 12:20 PM
Thank you Shannon and NBC for allowing the public to see the efforts we strive to make for our children and the success we are having.Shannon, you have been a light to me in working with my grandson.Without your story I would have never known what to do with my grandson when he was damaged.He is now a high functioning autistic little boy with Mitichondrial disfunction.Because of my bio-medical knowledge we began therapy immediatly.Our fight and major expense has been in the court room.We have wonderful medical experts that understand him but when there is denial of diagnosis by a parent, it is hard for the child to get the best of what is necessary.Our legal system as you know needs education.We are pushing through and will do what is necessary for success.We are fighting the good fight.You have shown us the hope and the light.For those that may question therapies, we have used mild HBOT for my grandson with wonderful success.NBC should cover the local legal issues, shocking.

Posted by: Dr. Trish Kennedy Location: No. Shore, Oahu Hawaii on Dec 31, 2008 at 09:36 PM
We have had good success with treating autistic and other brain pathology kids with the HBOT and nutrition. Kids making eye contact and expressing themselves. Maybe some day these txs will be covered by ins. We keep ours very affordable and offer physical rehab with nutrition. Aloha.

Posted by: Shannon Kenitz Location: Madison WI on Dec 6, 2008 at 12:15 PM
Again, Thank you NBC for the wonderful story on my daugher Grace and Gracin. It is because of the story that a local Wisconsin man called me to talk about HBOT after speaking to him for over an hour he then told me that he would like to help families in Wisconsin receive HBOT. I didn't know what that meant until we received a call from his representative stating that he would be giving a monetary amount to apply toward each families treatment program. If you would like more information on the Grants available at Wisconsin Hyperbaric Center please contact them directly at 608.278.4268. This would of never been possible without NBC and their dedication to running a great heart warming story of two families that struggle to keep hope alive for their daughter's . Thank you again and hats off to NBC!

Posted by: Rodolfo Location: Carra on Dec 2, 2008 at 10:46 PM
New!!!!!!!!!!!!!! Hyperbaric Services of South Florida, Inc. 8337 NW 12 St. # 101 Doral, Florida 33126 305 592 4433

Posted by: Kristi Location: TN on Nov 24, 2008 at 08:04 PM
I know both families and I want to say Thanks for all that you have done, Shannon You are fighting so hard for all of us and paving the way. I admire you and all that you do. You have the best facility by far. I truly am in AWE of Gracie. She is truly a GODLY miracle. I hope this gets sent to all TV stations world wide. Please forward this to everyone you know. My daughter has been to the clinic and she has had great success. We would have lost her from seizures if it had not been from getting Hyperbaric therapy. Congrats to Shannon and Stacie for fighting for your daughters.

Posted by: Husband of Stroke Lady Location: New England on Nov 18, 2008 at 09:44 PM
Alternative medical therapies are standing at the ready, waiting to do lots of heavy lifting for our ailing citizens, but the doctors and the drug companies have a huge money tree that is working quite well, for them, that is. Do people have to be intentionally hurt? Must we storm the Bastille? Congress, the FDA, the President, are all absolutely useless at breaking through the wall of disinformation that hems in the alternative therapies. If terrorists kill 3000 of our good fellow Americans, we'll spend hundreds of billions and another 4000 lives attacking a country that had nothing to do with 9/11. But 400,000 stroke survivors each year are pleading for better recoveries than they now generally get; not only is there no support for HBOT in the private clinics, but the stroke victim cannot even gain access, PAYING CASH OUT OF POCKET, to the hyperbaric chambers that many hospitals have ON THEIR CAMPUS! Experimental, they say. Don't waste your money, it's not the gold standard. They lie.

Posted by: Michael on Nov 18, 2008 at 08:47 AM
very nice story !

Posted by: Carol Location: Greencastle, Indiana on Nov 17, 2008 at 05:03 PM
Regarding Grace. Did she use regular Hbot the hard chamber or Mild Hbot the soft chamber. My 86 year old mother is a 2004 stroke patient and we have a m-hbot chamber in the home, and are starting that form of treatment. I pray based on the information I have read over the years that she can get help.

Posted by: Kristi Location: WI on Nov 17, 2008 at 11:42 AM
Monica, Here is the clinic's information: Wisconsin Integrative Hyperbaric Center 6200 Nesbitt Road Firchburg, WI www.WisconsinHyperbarics.com 608.278.4268

Posted by: Jennifer Location: SC on Nov 17, 2008 at 11:39 AM
Thank you so much! I shared your tears as I watched the video. It is my intent to continue HBOT for my daughter as well. We hit a very harsh financial time and I am trying to find a place here in South Carolina that may be more accessible than Florida for her treatments. I have to pray when I continue to hear stories as this as it reinforces the energy needed to fight for our children!

Posted by: phoebe Location: cleveland ohio on Nov 17, 2008 at 07:51 AM
h-bot has been here for years. buy your own h-bot tank for as little as $11,000 and stay at home. save time and money and do your own treatments. it is safe, no one has ever been hurt or killed using h-bot in there own home. it is all about getting oxygen into your system, it seems to help with many different aliments. h-bot is used in many different countries to treat many diffenent diseases. unlike here in the US where FDA and insurance companies will not allow us to have h-bot treatments. there are no drugs used in h-bot, and no side effects!!!!

Posted by: Nicole on Nov 16, 2008 at 05:03 PM
This was WONDERFUL! Thank you SO MUCH for sharing this information! Please ... If you have more information or get new information, I would greatly appreciate your continued sharing! That is what it is all about ... Sharing what we know and praying others benefit from it! We have a family who is part of ChiariPeople of Ohio (http://www.chiaripeopleofohio.org/hyperbaricoxygentherapy.htm) who has had success with HBOT and Chiari Malformation. Stop by and take a look at their successful treatments. Thank you again for keeping me in-the-loop! May your days be filled with what is MOST important in life ... love, kindness, compassion, respect, understanding, faith, and relief! In the spirit of "paying it forward*" ... With kindest remembrances ~ Namaste, Nicole**

Posted by: Cindy on Nov 16, 2008 at 05:01 PM
Thank you for sending this info!!!!!! How Awesome - we are looking into HBOT for our son.

Posted by: Onissa Mitchell Location: Tyler, Texas on Nov 16, 2008 at 09:31 AM
These is a very touching stories and I admire the parents' never quit spirit. I have an 11 year old son with cerebral palsy who has undergone HBOT in the past. I would really like to visit your facilty. Please forward information to me as soon as possible with the cost of therapy, etc. I would also have to fund raise as well because I'm a single parent and our insurance will not pay for it either. Thanks for your story. It has just rekindled the fire that have been dwindling for a while now. Also, we also have traveled to Poland for therapy at Euromed.

Posted by: Monica Location: Madison on Nov 15, 2008 at 03:59 PM
Oh my gosh!!!! what a wonderful story. Does anyone know the contact info for the clinic?

Posted by: Jenniferf Location: Wausau WI on Nov 15, 2008 at 11:45 AM
My daughter, Julia, had the privilege of working with Grace. It was probably the most significant experience she has ever had and one that will never leave her heart or her consciousness. Shannon and her efforts are remarkable and she and her entire family and supporters have earned their place in heaven.

Posted by: Steve Location: New Jersey on Nov 15, 2008 at 09:17 AM
great story!!! needs to get more national exposure. for those who want more information on the benefits of HBOT, i just read a book that spells it all out.There are so many positive applications for HBOT. the book is called "The Oxygen Revolution" by Dr. Paul G. Harch. it is easy to understand and spells it all out. you can buy it on Amazon.com for under $20. it is an opportunity to help those in need without alternatives.

Posted by: Michael Location: Chicago on Nov 15, 2008 at 06:27 AM
I am not sure why this arrived on my site but I am glad. I refer people that I see who have neurological problems, mostly strokes, to seek out hyperbaric therapy. When they speak to their cardiologist, the usaual answer is it does not work or it is only an anectotal therapy, don't waste your money. You only have to google 'stroke and hyperbaric therapy' to the many anectotal success stories. The recovery rate is remarkable. It is not all that expensive considering the cost of 'AMA' approved therapy. It should run about $300.00 for 2 hours. It takes the chamber time to reach the desired atmosphere for therapy.If you know someone who had a stroke, suggest it regardless of the time of stroke. A man in Texas was a number of years in therapy after a massive stroke. He recovered over 90% of his norm what ever that was. There is another oxygen therapy called CVAC. I have heared it also very helpful with stroke patients. I see there are many success stories. I sure wish more would be posted.

Posted by: Dr.T.R Location: Atlanta on Nov 15, 2008 at 05:20 AM
Congratulation. I remember you at Newbauer clinic. This is Dr.T.R. shantha. HBO has immense value and under used. IT is a must for Autism, and every kind of Neurological disorders and Cancers also. Thanks for your video news. Contact me, I have some more infomration to give you to help your child. Dr.Shantha, MD, Phd, FACA

Posted by: Ann Blake-Tracy, PhD Location: Waukee, IA on Nov 15, 2008 at 01:22 AM
THANK YOU!! This is why I have encouraged the use of HBOT for so long now! It can do wonders and should be approved treatment for SO MANY more problems than what it is currently used for. For over a decade now I have seen it do wonders in the withdrawal from antidepressants - especially when that withdrawal has been dangerously rapid. I have seen patients use HBOT with MUCH success. Since Autism is a condition of elevated serotonin levels, and that is the end result of antidepressant use, it should be easy to see that if it helps one it will help the other. Besides Autism, birth defects similar to what these little girls had, are seen in babies born to parents who have taken antidepressants, but no one mentioned any use. Did anyone ask? If these drugs were involved these families need to know that connection. Once again thank you for such a heartwarming piece and one that gives hope to so many! Ann Blake-Tracy, PhD, Executive Director, International Coalition for Drug Awareness

Posted by: Sally on Nov 15, 2008 at 01:20 AM
Shannon, Congratulation on the story! It is a fairly long piece. Very nicely done. Sally Averkamp

Posted by: Allene Location: Texas on Nov 15, 2008 at 01:18 AM
Good work. Allene

Posted by: crystal on Nov 15, 2008 at 01:16 AM
Thank you for sharing this wonderful information and may God continue to bless your family! Crystal

Posted by: Wener Location: Hauer on Nov 14, 2008 at 11:32 PM
Several years ago reported a lady with MS that she takes every moth a jump with a parachute, to keep ter MS symptoms down. It would be nice to have it available.

Posted by: Kelly Location: MN on Nov 14, 2008 at 07:04 PM
Oh my God!! That story is awesome. And, girl blue is your color!!! You look great on camera. You should be rockin' a blue sweater/blouse every day, sister. Thanks so much for forwarding this on to me. Kelly

Posted by: Anonymous on Nov 14, 2008 at 07:00 PM
Awesome.. That was a really nice clip! Lani-Lee Brothers

Posted by: Anonymous on Nov 14, 2008 at 06:59 PM
utterly fantastic. Ive passed it on to my group of 74. Ive seen huge gains from hbot as well for my son, recovered to aspergers from mercury induced autism. ronna hochbein otr/l www.brynnchapman.com http://www.myspace.com/brynnchapmanbooks View my book trailer http://www.youtube.com/watch?v=BIXd4y9iN6Q

Posted by: Clay Hammett on Nov 14, 2008 at 06:58 PM
We will win the battle!!! Clay Hammett

Posted by: Ken Stoller, MD Location: Santa Fe, NM on Nov 14, 2008 at 06:57 PM
Rebecca

Posted by: Rebecca on Nov 14, 2008 at 06:56 PM
Hi Shannon- What an absolutely wonderful piece!!! Your Grace is beautiful-can't believe how well she walks. You must be so proud of her! What your tireless perseverance is accomplishing is awe-inspiring. God sure picked the right person to work through! Lovingly, Rebecca

Posted by: Paul Location: Frisco, Colorado on Nov 14, 2008 at 06:38 PM
We were so impressed by Grace that our own clinic, Mountain Hyperbarics was born. Our son Anders is 9 years old, autistic, non verbal with several other issues and has just completed his 10th dive. He is improving and we hope to help others like him. Thanks Shannon

Posted by: Justyna Location: CA on Nov 14, 2008 at 06:38 PM
I have 2 boys on the spectrum and was wondering... how do you fund all of your therapy? HBOT is so much money, how do you provide that with speech, OT, and the other behavioral serivces you have? I am a single parent- you have done such a GREAT job

Posted by: Polly Location: 1 Timber Way,Daphne,Al,36527 on Nov 14, 2008 at 06:32 PM
HBOT has been a hallmark treatment here at New Beginngs Medical Group for almost 4 yrs now.Our victories include improvement in stroke,Parkinson,Alzheimer and autism spectrum disorders. Our latest prize is a 4 yr old who came to us making no eye contact,unable to form words let alone sentences,spinning,and extremely agitated and hyperactive.Now she is very engaging and will sit with you and explain in great detail whats been happening in her life,show you things you need to know in her books,and introduce you to her toy characters. Her mother couldnt be more pleased!

Posted by: Tom Ruf Location: Trussville, AL on Nov 14, 2008 at 06:00 PM
Fantastic story. I have met Gracie and she is a remarkable young lady.

Posted by: Jamie Location: Virginia on Nov 14, 2008 at 05:46 PM
What amazing mothers!! Willing to do whatever it takes for their children, never giving up hope...I do hope that more people will see this and know that even though therapies like this are not recommended by most doctors (just like this one who opened his eyes for his son) They do work!

Posted by: Amy Location: Southern California on Nov 14, 2008 at 04:08 PM
My son, who is on the Autistic Spectrum, just completed his 35th dive...and is doing amazing! Lots of speech, amazing eye contact...and so much more connected with us and his surroundings. We love HBOT!!

Posted by: Emily Location: Madison on Nov 14, 2008 at 12:23 PM
What an amazing story. It's so nice to hear positive news for once. I hope these children continue to reach milestones, and help change peoples minds about alternative healing. What an inspiration

Posted by: Joseph on Nov 14, 2008 at 11:41 AM
Can I get my dog into the hyberbarric chamber? Seriously, Its good to know there is a facility in Madison that has hyberbarric chambers. None of the hospitals in Madison have them and they are at times required for certain medical treatments. (Like a big air embolus). Until now, the closest chamber was in Milwaukee. I hope Mrs Kenitz will be proactive in letting the 4 Hospitals in madison know about her facility and hopefully she can get some contract work from them.

Posted by: Anonymous on Nov 14, 2008 at 09:56 AM
Such a positive, touching story! She is truly and angel and it's so nice to see her journey be able to help others!

Posted by: Anonymous on Nov 14, 2008 at 06:48 AM
She truley is an angel!

Posted by: John Hamilton Location: Madison on Nov 13, 2008 at 10:24 PM
What a wonderful story!!!!! This is what we like to see on TV. So much better thean the grim scarry news we hear these days!

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