KSI FOR JAKE
Each year, the United Mitochondrial Disease Foundation brings together clinical and basic science researchers sharing an interest in mitochondria from all over the world. Participants come from many fields, including biochemistry, genetics, neurosciences, cardiology, cancer, diabetes, nephrology, hematology, pediatrics and aging research.
During the symposium, patients and families meet others who, like themselves, are seeking knowledge. They may be parents or an individual with similar experiences or someone that lives close to them. Patient and family attendees are given many opportunities to meet some of the top mitochondrial specialists from around the world.
The symposium encourages the exchange of information and cultivates networking among physicians, researchers, patients and families. Meeting format typically consists of a four-day scientific program and a two-day patient/family program.The family had all intentions and was ready to prepare for this big event, but due to unexpected turn of events, they’re funds have been depleted. They were able to get an appointment with Dr. Cohen at the Cleveland Clinic in Ohio and could not pass it up for Jake. There, Jake was given the opportunity to meet with one of the best specialist dealing with mitochondrial, neuroscience, and genetics. He was able to get an MRI, EEG, and many other tests to help us understand where his condition is at this point so we can provide the best care to him. It was a long and enduring two weeks for the family and Jake but they’re happy they went.
With that said, KSI has stepped up to help this family in their time of need. We are asking for your donations to sponsor them at this symposium. KSI has sponsored teams to gaming events and profited nothing so why not put the money for a worthy cause. Everyone who donates should feel your heart grow and know that you’re helping someone else.
Kristy Goodwin is the Eastern TN UMDF Ambassador and this will be very beneficial for them due to the advanced knowledge the UMDF has provided. She will be able to come back with so much knowledge that it will be passed onto others who are involved with Jake’s care and to others who are affected. With such heartfelt understanding of this terrific cause, Tennessee’s governor has declared the third week in September “Mito Week”. Kristy rarely misses opportunities to learn and to teach about mitochondrial, so whatever we can do to help, WE MUST DO IT!
Thank you to everyone who has donated! Please continue to spread the word and do it because you want to not because we are asking. It means so much more to us and will to you too.
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Jacob's 4th Birthday
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April 15, 2008 - 9:00AM - 1PM
Tennessee State Capitol Building, Nashville, TN
The State of Tennessee has passed a resolution declaring April 15th as Mitochondrial Disease and Autisum Awareness Day on the Hill in Tennessee.
We are encouraging ALL members and their families to come to the State Capitol that day to raise awareness of mitochondrial disease in the Tennessee State Governement.
Families may want to make appointments to meet with their individual representative on that day. To find out who your senator or representative is go to www.legislature.state.tn.us. For general tips on communicating with your representative or senator go to www.legislature.state.tn.us/senate/members/Communication.pdf.
It has also been suggested that you use this time to share your exeriences of living with the effects of Mitochondrial Disease and the obstacles and difficulties you have encountered obtaining the care, resources, and assistance you need as citizens with special needs in the State of Tennessee.
We will have tables set up with story boards, pamphlets, and information about Mitochondrial Disease on the Hill that day. WE NEED YOUR HELP !! If you have not already done so, please send a brief story and picture of you or your affected family member affected by Mitochondrial Disease to midtenmito@yahoo.com so we can finish the story boards and handouts. If you cannot e-mail them, please let us know and we will give you an address to mail them. You may call Courtney at 615-969-1353.
We also will be specifically requesting a Mitochondrial Disease Awareness Week for the 3rd full week of Setember.
We hope that all of you can attend this important event. This is a wonderful opportunity to raise awareness about Mitochondrial Disease in Tennessee !
With Hope for a Cure,
SONYA MURRAY, COURTNEY FELLERS, KRISTIE GOODWIN, and KATHY CORLEY
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Website Update
We would like everyone to know we are currently in the process of updating information. Thank you for your patience. Feel free to browse through and we thank you for your interest and support.
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HAPPY 4th BIRTHDAY JAKE !! (3-6-2004)
Yes, Yes, I made it to 4! Can you believe it! Watch out because I have so much more mischief ready to let loose! I'm ready, the question is are you? Here I come....
....The Jake Man; Bubba or Bubba Loo; Jake PooPoo; Jack Jack. Yes, my family has many names for me! I love them all 
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Eastern Tennessee Mito Group of UMDF
Please Join the Eastern Tennessee Mito Group of UMDF
for an evening with Dr. Bruce Cohen
Bruce Cohen, MD is a mitochondrial disease specialist from the Cleveland Clinic Foundation and a member of the UMDF Scientific and Medical Advisory Board.
Tuesday, January 29th, 2008
7:00 – 9:00 pm
T.C Thompson Children’s Hospital
Probasco Auditorium
Erlanger Medical Mall
979 East Third Street
Chattanooga, TN 37403
RSVP or Questions: Contact Kristie Goodwin at 423-280-4066 or mitomom@charter.net
We hope that you will join us for this wonderful opportunity to learn more about mitochondrial disorders!
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Make-a-Wish to send Jake and Family on Disney World Vacation
By: Tiffany Soyster
Source: The Herald-News
12-23-2007
LINK
Thanks to the Make a Wish Foundation, Jacob and his family will enjoy an all-expense paid trip to Disney World.
Jacob, the 3-year-old son of Kristie Goodwin and Jeramie Mantooth, was diagnosed with Mitochondrial Encephalomyopathy, Complex I in 2005.
The disorder affects the mitochondria of the cells, limiting even the simplest life functions such as breathing and eating.
Kristie shared this example of how the disorder affects the body:
“Mitochondria provide the energy for the body to perform all functions. They provide ‘energy for life’ but Jacob’s mitochondria do not function properly.
“Imagine a city with half its power plants shut down. The city would not be able to operate efficiently; at best there would be a brown out with large sections of the city working below optimum levels.
“That’s what this disorder does to the body, one-half of its energy producing facilities shut down. The brain is impaired, vision is dimmed, muscles twitch spastically or are too weak to allow the body to walk or write, the heart is weakened, and food is difficult, if not impossible, to digest.”
Despite Jacob’s condition and the inability to talk due to a trach, his mother said he is very capable of communicating.
“The majority of his communication is through facial expressions....He often plays opossum at therapy and with us if he decides he’s done or wants you to stop that particular activity; because as soon as you quit his eyes pop open and he is raring to go,” Kristie said.
The Make a Wish Foundation, the nation’s largest wish-granting organization, grants wishes to children ages 2 1/2 to 18-years-old that are suffering from a life-threatening disorder.
“Our mission is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy,” said Tory Hood, program services director for the East Tennessee Make-a-Wish office.
Children are referred either by doctors, family members or themselves. The foundation then determines if the child meets the medical requirements set in place.
Kristie said she and one of Jacob’s nurses were talking one day, the the foundation was mentioned.
“She suggested that I call to see if Jacob was eligible. So I did,” Kristie said. After the child’s health condition is determined, a team of volunteers visits the family to learn more about the child.
Teresa Longwith of Cleveland and Kelly Sullivan visited with Jacob and his family to learn about his personality.
“In a lot of cases, you want to find out what makes them smile,” Longwith said. “He likes Dora and bright colors and things that make noise. He loves sound.”
While visiting with Jacob and his family, Longwith said the family decided that a Disney World wish, which is one of the most popular wishes, would work the best.
Kristie said when she found out Jacob’s wish had been granted, she didn’t know what to do. “I was ecstatic,” she said. “I thanked God for an answered prayer, it seemed surreal. I have always loved to travel and have wanted to take Jacob places, for him to be able to see things and this was our chance. I have always imagined us riding It’s a Small World at Disney World and how much Jake would love it. I just never thought it would be possible.”
On Jan. 3, Jacob and his family will travel to Orlando, Fla. Jacob and his parents will stay in a special housing village near the park. The village has handicapped amusement rides and a pool. In addition, Jacob will get to enjoy a meal with Disney characters.
“These accessible rides will allow for Jacob to experience some independence. He will be able to ride things and see and do things on his own, with less assistance anyway, than he would ever be able to do here. There are shows that he will be able to see, characters he will get to interact with and he will be able to enjoy them without us worrying about who we are disturbing,” Kristie said.
Jacob will be joined by two of his nurses, and both sets of grandparents. In addition, several aunts and uncles are hoping to join the group in Florida.
“Everyone wants to come while we are there because this is truly a once in a lifetime opportunity for us,” Kristie said.
Currently, Kristie is trying to raise awareness about Jacob’s disorder, speaking at such groups as the Rhea County Health Council.
“I am currently an Ambassador for the United Mitochondrial Disease Association for Tennessee. I try to raise awareness as much as possible at any opportunity that I am given. I carry wallet cards to hand out if anyone asks about Jacob.”
In addition, Kristie had a booth set up at the Pumpkinfest.
On Dec. 22, Jacob and his family will enjoy a send off party at The Heartland Grill thrown by Make-a-Wish.
“I would like to thank Chris Goetz [at The Heartland Grill] for allowing us to have the send off,” Kristie said. “Also, I would to thank everyone mostly for their thoughts and prayers for my family. Without them things would be much more difficult.”
For more information on Jacob or mitochondrial encephalomyopathy, complex I , visitwww.caringbridge.org/visit/jacobmantooth andwww.umdf.org. Kristie also welcomes questions regarding Mito or other special needs issues. Her e-mail address is mitomom@charter.net.
Jacob has become somewhat of a local celebrity in his three years. Now, he will visit the place celebrities talk about.
“This trip will give Jacob the chance to get to do the things that other children are able to do,” Kristie said.
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- HB D R - a long term member from the KSI Global Gaming Community and well respected Administrator of our Forums. He has come a long way from first joining KSI in October of 2005.
- I Merkin I - a relentless jokester always looking to humor others and from time to time he's an excellent target for getting "No Scoped!"
- N ReapeR A - a skilled team player who is "FOR THE TEAM!" no matter the outcome.
- Vaporyan - the assist king in team play and he is the guy you call upon if you need support in the heat of battle.
The Ego Killers respectively won first prize and they were more than happy to donate a total of
$60 USD of thier entire earnings to Jake and his family. In total, jakes and his family recieved $200 USD. If you see any of these four members, please take a minute to congratulate them on thier victory!
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Pray for Jake
, he's not liking something and that's his way of telling us. Trust me, he has a personality all his own! No matter what though, you can't keep yourself from loving him. He loves all the attention and knows how to get it!He has been recovering from his surgery from a couple of months ago and it has been a road of ups and downs. He had a Baclofen Pump put in so he could receive the medication through his spine to get a more effective result in order to help his muscles relax from spasms. He came through and all was going well until it was time to refill his pump with medication. About three weeks ago, he went and got new medication injected into to the pump. All seemed well until the next couple of days following the visit. He was having pain and a lot of discomfort and we were all at a lost to what was causing this. By the fourth day, his parents decided to take him back to the doctor and I went along to help. I knew something wasn't right because this was not the smiling boy I came to love. He was in so much pain and discomfort all night
, it was impossible for him to rest. Needless to say, he had to be admitted to Vanderbilt Hospital in Nashville the very next night because he became unresponsive to his surroundings. Come to find out, he was having Baclofen withdrawals. His neurologist confirmed that the medication was not the right medication, so therefore he was not getting his dosages and his body went into withdrawals. After a four day stay at Vanderbilt, he came home and boy was I glad to go to work that night! He looked so much better and even got up enough strength to smile and coo. That night seemed to be different though. He was waking up crying in pain and could not get comfortable no matter how we would position ourselves. Although he was in discomfort, he would do everything in his will to smile. He's such a fighter! This restless and discomfort during the night continued to go on every night, so he was losing sleep and had no way of preserving his energy level. After a week and a half, he went to the ER at TC Thompson to have xrays done to check for a blockage in his colon because he was having difficulties with his bowel movements. After confirming the xray was misread, the gastrologist diagnosed him with having an paralytic ileus. This is an inability of the intestines to move normally even though there is nothing blocking them. This temporary paralysis occurs most common after having surgery and from certain medications. He had all the symptons that went along with it such as; abdominal discomfort, bloating (distention), nausea, and vomiting and not able to pass gas or stools. Therefore he was admitted for further observations. He had a nasogastric tube inserted through his nose reaching down into his stomach to release any fluids or air to relieve pressure. He still was in pain and was not a happy camper. 
Finally he was able to have morphine to help with the pain but it just wasn't enough. He continued to have restless nights and days and all you could do was hold him and cry with him when he would start hurting. On top of all that, he hasn't been able to eat going on three days and now has a Urinary Tract Infection. Seeing that he wasn't improving, his parents decided to take him to Vanderbilt where his team of doctors are. There, he will be placed in the Pediatric Intensive Care Unit and get the care he needs because that's like his second home and everyone there knows how to care for his condition. His condition is not a common one so it's very important that he gets the proper care. He's a small package with a lot of special details. I hope that after you read this, you put all things aside and thank God for all your blessings. He truly is a gift from God because he keeps my life in perspective and reminds me to cherish the little things and not to take anything for granted.
I'm asking for your help to reach out to his family. This is emotionally, mentally, physically, and financially stressful to them. We have set up a paypal donation link and I am asking each and all of you to reach in and give what you can. He asks nor wants for anything but looking at the pain in his face, he's asking for it to go away. All he wants is to be held and loved on. What more could you ask for!
Please register here and leave him a comment. Your thoughts and prayers will be more than appreciated. Please help us help them. We want him home and well for the holidays!
I LOVE YOU JACOB
GET WELL AND COME HOME SO WE CAN PLAY! Comment(s): 8 | Misc
Woman raises disease awareness
DAYTON, Tenn. -- After Jacob Mantooth was born three years ago, doctors kept telling his mother he was fine, she said.
But Kristie Goodwin said she felt like something was wrong. He cried all the time and at one point fell into a seizure, she said.
"It looked like he had a stroke," she said.
After going to different hospitals and doctors, she finally took Jacob to Vanderbilt University Medical Center, where doctors diagnosed a rare, genetic mitochondrial disorder that affects the cells of the body, Ms. Goodwin said.
No cure has been found, she said.
Within the last few weeks, Ms. Goodwin has started a chapter for mitochondrial disease in Southeast Tennessee and has pledged to bring awareness.
She said many people, even doctors, do not realize the symptoms of mitochondrial disease and that it easily can be misdiagnosed.
"It's only been within the last six years they've really done the research on mitochondria," she said.
There are many types of mitochondrial disease with many different symptoms, such as autism, failure to thrive or brain damage, she said. Doctors have begun linking other diseases, like sudden infant death syndrome, to the disorder, she said.
Chris Goodwin, a Rhea County commissioner and Jacob's grandfather, said they were lucky to find out about Jacob early. He is now 3 years old.
"A lot of people don't know what's going on until it's too late," he said.
Chuck Mohan, executive director and chief executive officer for the United Mitochondrial Disease Foundation, said many of the children suffering can have immune deficiencies.
"Many of these children suffer from neurological inflictions," he said.
Mitochondria generate 95 percent of the energy for the body, he said. When the disease attack, it takes a lot of that energy away, he said. Diagnosing the disease can be costly, he said.
The disorder has not gotten national attention and many medical professionals need to be educated about it, he said.
"Many children go undiagnosed," Mr. Mohan said.
Ms. Goodwin said she has spoken with government officials about setting up an awareness month and selling license plates across the state. She knows of two other children in Southeast Tennessee who have suffered from a mitochondrial disorder.
There may be more, she said. Some adults might have the disorder and not know, she said. She knows of one person who is 60 years old and just diagnosed, Ms. Goodwin said.
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