Simsbury Lights Up to Help Paxton

On Sunday, the streets of Simsbury will be lit up in support of Paxton Holmes, a little boy who needs a new liver.

With the cost of a transplant often exceeding $500,000, many transplant patients are unable to shoulder the financial burden of such a procedure. The Children's Organ Transplant Association (COTA) is a national charity located in Bloomington, Indiana, dedicated to organizing and guiding communities in raising funds for transplant-needy patients. In Simsbury, volunteers are raising funds for transplant patients like local boy Paxton.

Paxton's family asked for assistance from the Children's Organ Transplant Association. The organization's priority is to assure that no child is denied a transplant or excluded from a transplant waiting list due to lack of funds. One hundred percent of all funds raised are used for patients' transplant-related expenses.

Paxton, 7, was diagnosed with Maple Syrup Urine Disease (MSUD) soon after his birth, and doctors at the Children's Hospital of Pittsburgh in Pennsylvania have recommended a life-saving liver transplant. An estimated $75,000 is being raised by Simsbury volunteers, with $20,000 of that coming from the selling of the luminaries (and private donations) and from 5pm to 8pm on Dec. 19, they will be lit all over town.

The Simsbury Junior Woman's Club is organizing the event, and the luminaries are sold out.

"At 10 days of birth we received a call from the hospital," wrote Sarah Holmes, a former Simsbury Junior Women's Club president, on her blog. "The state's newborn screening test came back positive for a very rare metabolic disease called Maple Syrup Urine Disease. He was the first child born in Connecticut to be picked up with MSUD by the state's newborn screening. We later learned that not all states mandated testing for this and other metabolic diseases. We rushed Paxton to Yale New Haven Hospital where we learned that our precious baby had a rare and complicated disease."

The disease means Paxton's body is unable to break down protein. This means he has to keep to a strict diet, including the liquids he drinks. The family orders special low protein foods not available in grocery stores. He needs to drink an exact volume of special formula daily to give him the essential nutrients he needs for growth.

If he gets sick, when the family goes to the hospital he needs special medical care, and has to go to a hospital with a metabolic clinic.

"We arrive with our emergency protocol letter written by his geneticist which explains the unique procedures that need to be followed. He needs very specific IV fluids and frequent blood draws to monitor his blood levels. If certain blood levels are elevated he risks being exposed to potential irreversible neurological impairment," wrote Holmes.

Paxton and his family have traveled to Pennsylvania and Chicago seeking answer and advice on how to best care for their son. It was during this time that the family learned that the effects of MSUD can be "cured" by a liver transplantation.

After a lot of discussion, reflection and prayer, the family made the difficult decision this summer to move forward with the liver transplant. The Children's Hospital of Pittsburgh (CHP) is the most experienced center for performing liver transplants with MSUD patients, so that is where Paxton will receive his transplant. In July they received word that they were approved to move ahead with the process, which consisted of first going through a consultation and evaluation at CHP.

On August 2, 2010, the family received word that Paxton was approved to be on the UNOS (United Network for Organ Sharing) transplant list. Now, the family awaits a call when there is a match. When the call comes, Paxton will need to be in Pittsburgh within six to eight hours.

"We have been advised that most patients wait six-12 months, some even as long as two years," she wrote. "But it could be tomorrow, you never know when you will get the call." 

And it doesn't end there. After the surgery the family will need to stay in Pittsburgh for another estimated two to three months to monitor for complications and adjust to the immunosuppression drugs. During that time the family will most likely live at the Ronald McDonald House, which is attached to CHP.

A transplant will mean that Paxton's brain will no longer be subject to possible damage during illness and that he will be able to live independently as an adult. He will be able to have a normal diet.

"For us, we feel that this choice will provide him with the best possible future. We know the road ahead will have its difficulties and that we will be introduced to a different set of challenges, but we know that the long-term benefits will outweigh any short term setbacks we may encounter," she wrote.

For more information or to make a donation, visit  http://cotaforpaxtonh.com/node/1.

Upcoming events:

Light Up the Night for Paxton

The Simsbury Junior Woman's Club for the First Annual Luminary Night. The event will be held on Sunday, Dec. 19, from 5pm to 8pm pm. Homes throughout Simsbury will light luminary candles and place them along their driveways and walkways in a non-denominational community celebration of the season. All proceeds benefit the Children's Organ Transplant Association and the monies will directly support Paxton Holmes.

Simsbury Hockey Day for Paxton Holmes

Come watch the Simsbury Youth Hockey Mites House Team play during the CT Whale Game Intermissions on Sunday, January 2, 2011. The game starts at 3pm at The XL Center in Hartford.

The cost is $19 per ticket for lower section or $12 per ticket for upper section

For every ticket purchased, $5 will go to the COTA for PaxtonH campaign.

To reserve your tickets log on to:

https://oss.ticketmaster.com/html/go.htmI?l=EN&t=wolfpack&o=2260232&g=322

Code: Simsbury

Contact Kim Loveland at 860-651-4736 or keloveland@yahoo.com with any questions.

Volunteers are needed to assist with fundraising activities. Individuals and groups interested in more information can contact community coordinator Jamie Dagenais at 860-217-0287 or Jamie@COTAforPaxtonH.com.

Donations may be made in person at any Bank of America branch location using account number 385013054030 or mailed to the Children's Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks or money orders should be made payable to COTA, with "In Honor of Paxton H." written on the memo line of the check. Secure credit card donations are also accepted online at www.COTAforPaxtonH.com.