DATE POSTED: Thursday, July 31, 2014 2:46 PM EDT
By Jennifer Kohlhepp,Managing Editor
HAMILTON — Alexander Cuevas was born prematurely on March 12, 2009 so his immune system was not quite ready to fight off an infection that would change his family’s life.
Shortly after his birth, he contracted necrotizing enterocolitis, an infection common among premature infants that attacks and kills tissue in the intestines.
Many children manage to overcome the infection and move onto healthy lives. Alexander’s case was particularly severe. He eventually managed to beat it, but not before a surgeon had to remove his entire colon and the majority of his small intestine.
Nowadays, he receives the majority of his nutrition from Total Parenteral Nutrition rather than from food. While this method has allowed him to grow, play, and even begin school like a normal 5-year-old boy, it is not a permanent solution. The longer he relies on it, the more likely he is to suffer dangerous infections and complications. “We go to the hospital pretty frequently, every three to four months,” his mother Anivel Rivera, said. “He gets dehydrated and it gets to the point where we can’t manage it at home and he needs (intravenous) fluids and antibiotics.”Alexander has been evaluated and added to the national transplant list. A transplant surgery will allow him to live a near-normal life and digest food the traditional way. His family anxiously awaits the call saying Alexander’s organs are available.
“Every day is different,” his mother said. “Some days I’m in tears because I can’t believe this is what we’re dealing with and other days I take inspiration from him. If he can deal with all of it, so can I. We’re basically waiting for the intestinal transplant. It’s the latest organ to be approved for transplant and there’s a lot of risk with the transplant. Alone, knowing that is very difficult.”
The surgery will take place at the Children’s Hospital of Pittsburgh, which is the top hospital in the country for this procedure. While risky, it could be a miracle for little Alexander.
This surgery costs $2 million dollars on average. Even after insurance, the costs will add up for years to come. Alexander will need to be near the hospital in Pittsburgh for checkups for nearly one year after the surgery, and will need immunosuppressant drugs for life.
Since these costs are so daunting, his family is asking the community to help raise $50,000 through Children’s Organ Transplant Association (COTA) for Alexander’s medical expenses.
“People should consider donating to this cause because this type of emergency that could have happened to any child,” COTA Public Relations Coordinator Emma Yasinksi said. “No family is prepared for the toll this can take on them both emotionally and financially. Little Alexander deserves a chance at a healthy life and this transplant will give him that chance. COTA exists because families with children who need transplants need support from their communities. No family should have to go through it alone.”
Ms. Rivera said, “We have to be prepared to stay in Pittsburgh for six months to make sure he doesn’t reject the organ and we’ll need to have a home to come back to so we’ll have to keep paying the mortgage. We have to figure out how we’re going to live out there. These are things insurance doesn’t pay for.”
COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. One hundred percent of all funds raised are used for patients’ transplant-related expenses.
“We will be hosting many fundraisers throughout the year,” Ms. Yasinski said. “People interested in keeping up with them can follow cotaforalexanderc.com or the facebook page ‘Alexander’s Adventure-ACOTA5k.’”
The upcoming fundraisers for Alexander include Burger Mania, where COTA will host a booth with games and information this Saturday. For more information, visit www.facebook.com/BurgerManiaCookOff.
On Tuesday, Sept. 16, On the Border next to Marketfair Mall will be donating 10 percent of its proceeds from patrons carrying Alexander’s flier to COTA.
“Our biggest event planned to date is the 5K,” Ms. Yasinski said. “Alexander’s Adventure — A COTA 5K will be a Halloween-themed, costume-friendly 5K held in Mercer County Park on Sunday, Oct. 26. A signup page will be posted soon. We are still looking for sponsors.”
Individuals and groups interested in more information can contact COTA Community Coordinator Anthony Mango at 609-356-6771 or anthonymango55@gmail.com.
Donations may be 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 Alexander C” written on the memo line of the check.
Secure credit card donations are also accepted online at www.COTAforAlexanderC.com.