New Jersey Girl Anxious to Rock and Rock … Now That She Has a New Liver
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Kim Carter Parker (217.494.6110)
New Jersey Girl Anxious to Rock and Rock … Now That She Has a New Liver
Bloomington, Indiana – September 12, 2011 -- Kayleigh Petersen of East Brunswick, New Jersey, is a rock star -- like New Jersey native son Bruce Springsteen. But just two years ago, Kayleigh’s family was unsure whether their beautiful baby girl would ever be rocking or rolling.
At Kayleigh’s 18-month-old well-baby check up, her parents were hit with unexpected news. Her liver was swollen and the pediatrician sent her to a local hospital for an emergency ultrasound. After a week of tests and an invasive liver biopsy, the Petersens were sent to Children’s Hospital of Philadelphia for further testing. On March 9, 2009, Rich and Mary Petersen heard the devastating news -- Kayleigh was diagnosed with Tyrosinemia Type 1, a fatal genetic disorder that affects one in 100,000 babies.
Instantly, the Petersen’s life turned upside down. Kayleigh was placed on a rare medication; a special formula to replace her milk, and a very strict low-protein, low-fat, low-phenylalanine diet. The hope was the combination of these three treatments would reverse the damage the disorder had done to her liver. It did not work and Kayleigh struggled with severe cirrhosis of the liver. She became extremely malnourished from the diet and needed a liver transplant to survive.
With this reality came the realization that the Petersen family needed financial assistance for Kayleigh’s impending liver transplant and ongoing medical care. They heard about the Children’s Organ Transplant Association (COTA) and decided to seek COTA’s guidance and support.
“COTA gave us hope by providing us the financial stability we needed for Kayleigh’s medical treatments. With COTA, we have been able to focus our time and energy on Kayleigh’s care instead of on calls with insurance companies trying to figure out if we could afford to save our daughter’s life,” said Rich and Mary. “COTA is about families. COTA not only helps make sure that children needing transplants are given the care they need and deserve, COTA also gives parents support that they need through this time as well.”
On June 8, 2009, Rich and Mary received the call they had been waiting for. They packed their bags and headed to Philadelphia. On June 9thKayleigh received her new liver … and her second chance at life. Kayleigh was released from the Children’s Hospital of Philadelphia only 13 days later and spent the summer months of 2009 recovering and regaining her strength.
Aside from a cold or two, and a bout of possible rejection, Kayleigh has made remarkable post-transplant progress.
According to Rich and Mary, “We think two miracles occurred, almost simultaneously, during Kayleigh’s transplant journey. One was Kayleigh’s life-saving liver transplant and the other was becoming a part of the COTA family. COTA lifted the huge financial burden we were facing and allowed light and positive thoughts to shine through. A true miracle.”
Watch out Bruce … There’s a new up-and-coming ‘Boss’ of New Jersey!
The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.
For more information about organ donation, or to find a COTA family in your area, please email kim@cota.org.