TJ's story
HOW CAN YOU HELP?
Group of TEAM TJ Runners, running in honor of TJ at the Cook Forest 5K, 2008
The funds raised and donated for TJ & COTA are used exclusively for Transplant expenses, current and future. It is expected that 10 - 20 years after a heart transplant the patient will require a second transplant. The Wilson family is looking ahead to prepare for that time as well as taking care of expenses now.
Money raised will help cover remaining medical expenses after insurance and for household expenses while TJ is in the hospital and Lori & Randy need to stay with him. It will also help with CO-Pays for prescriptions, doctor visits, and for travel expenses to the many appointments they have.
Money not used remains with COTA and will continue to be raised to assist TJ with his future Transplant expenses. Any money not needed by TJ or his family will be distributed to other COTA patients who need assistance.
The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. In Mars & Clarion areas volunteers are raising funds for TJ's transplant expenses.
Many transplant patients and families are unable to shoulder the financial burden of a transplant. TJ's hospital bills have far exceeded the average $500,000+. As of June 2008, his bills have surpassed $3,000,000 - three million dollars.
An estimated $75,000 is currently being raised by volunteers in Mars (PA), Clarion (PA), Worcester (MA) and others all over the country to help with the cost of his transplant expenses. There are 3 ways you can donate.
- Click here to donate online
- Mail Check payable to C.O.T.A. w/ 'in honor of TJ Wilson" in memo to Children's Organ Transplant Association, 2501 West COTA Drive, Bloomington IN 47403
- Make a deposit at your local PNC Bank, deposit to COTA for TJW account # 6006224694.
You can also help by volunteering or sponsoring your own fundraiser to benefit COTA for TJ Wilson. You can contact Karen Dwyer to discuss fund raising ideas, events, or to find out how to help.
MARS AREA FALL CRAFT SHOW - FAST APPROACHING!!! TEAM TJ needs some help.You can donate items or volunteer time.CLICK HERE TO LEARN MORE!
TJ's Story - The Beginning
It can happen to anyone at anytime, anywhere. It happened to TJ.
Born on October 15, 2005, T.J. WIlson was a healthy boy. He loved to play outside with tractors, balls, and in the water. He had just started Pre-School and was quickly developing a funny sense of humor.
On June 12 his parents took him to Children's Hospital in Pittsburgh after he was sick the night before. They suspected he was dehydrated and thought he may need fluids.
The doctors in the ER treated him with fluids and he suffered a cardiac arrest.
What no one knew was that he was suffering from Viral Myocarditis. A virus had attacked and damaged his heart. His weakened heart couldn't pump the necessary fluids. These fluids backed up into his lungs.
While his mom & dad watched, doctors attempted to re-establish a heart beat with no success. The only option was to have the doctors place him on a machine called ECMO (extracorporeal membrane oxygenation), a kind of heart/lung bypass. This machine would circulate and oxygenate TJ's blood and give his heart and lungs time to recover. This process was described to TJ's parents as being "a life saving procedure" and that was the truth. It was the only thing that could have saved his life.
Over the next week his condition seemed to improve and people were very hopeful. He was removed from the ECMO machine after one week, but remained on the respirator.
Over the next 2 weeks there were several times that he seemed to be recovering. But each time he would have episodes that would take him back to the beginning. It became apparent that there was something else going on with his heart. It was become more and more obvious that there was something else going on.
TJ was in severe congestive heart failure.
He was transferred to the Cardiac Intensive Care Unit and had a Heart Biopsy/Catheterization on July 3, 2007. That evening TJ's family would learn how badly damaged his heart really was.
He was diagnosed with Restrictive Cardiomyopathy, a rare condition in which his heart couldn't relax to fill with blood. In TJ's case, this was caused by scar tissue from the damage done by the virus. The only course of action to save him would be a heart transplant. But he was too unstable to wait for a donor, he needed assistance now.
It was decided that TJ needed a Berlin Heart. This device could pump and circulate the blood for TJ's failing heart. The hope was this device could allow TJ to be awake and breathing on his own. Eating and getting out of bed could once again be reality instead of just hopes and dreams.
For the next week TJ's parents stayed out of his room, he was not moved, and there was no stimulus at all. His heart could not take any excitement, even a parent's touch was too much and sent his heart rate and blood pressure all over the charts. Nurse not alone cared for and treated but became guards and kept everyone away.
During this week Children's Hospital of Pittsburgh was trying to expedite the arrival of a Pediatric Berlin Heart.
Because this device is not FDA approved, they needed to get a special Compassionate Use allowance. This was a long, tedious process.
The Berlin Heart arrived and was placed on TJ July 11, 2007. They removed the ventilator 2 days later, and he said his first words in over a month - MaMa, followed by BaBa and then Daddee.
TJ's parent's were told on July 16 that a donor heart was available and that the team was going to accept it. The doctors at Children’s Hospital of Pittsburgh in Pennsylvania performed a life-saving heart transplant July 16, 2007 at 8:00pm. The surgery was over just before midnight and was a success. In the words of one OR nurse,everything that could go right, did.
TJ has made a strong recovery. It hasn't been smooth and has had its fair share of bumps, but this little boy is tough and determined. Nothing brings him down, he will be healthy, GO TJ GO!
TJ's Story ROUND 2:
Here we go again.
TJ Wilson was readmitted to the Children's Hospital of Pittsburgh on 1/2/08. He was diagnosed with a complication from Transplant called PTLD. This is a disease caused by the Epstein Barr Virus and causes tumors to grow in lymph tissues.
In TJ's case, these tumors are all through his GI tract. He had to be completely off food for weeks and unfortunately lost a lot of blood from these tumors bleeding.
The best cure for PTLD is your own immune system, but in a transplant patient, allowing a strong immune system means rejection. The doctors need to find the right balance between the two and maintain it.
With TJ, his tumors and lesions were more advanced than originally thought. His immune system quickly started rejection and he had to be treated for rejection. They started a 4 week course of medicine to assist his body with the tumors.
On Friday 2/22 TJ was checked for the status of both the rejection and his PTLD. The results of both biopsies were encouraging. The team of Doctors believed TJ was recovering.
On February 29, 2008, TJ has his trach removed. This was a smooth process without any complication. Unfortunately during that same time, he became positive for an intestinal infection called C.diff. The doctors started an IV antibiotic to help TJ fight off the bacteria.
March 11 he cleared the infection and everyone wanted to see TJ going home. He was slowly gaining back some of the weight and strength he lost through the hospitalization.
March 13 the doctors rescoped and biopsied GI tract and his heart. They saw no obvious signs of PTLD and his heart pressures were all good and normal.
ON MARCH 20th, TJ & MOMMY CAME HOME FOR A SECOND TIME!!!
Such a happy day for all. He's been doing very well at home and continues to make a good recovery. He's full of energy and being a normal 2 year old. He is still having problems with his GI issues, but that may take a long time to heal completely. He's also had some issues with his Liver enzymes, but that seems to be resolving on its own. He remains at home playing and healing with his family.
Prayers and thoughts of continued healing and strength are welcomed.
Click here to donate online