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Pouches' Community Corner

On August 17, three weeks after a routine pediatrician appointment for their then 4-month-old son, Levi, Liz and Angel Colon received news that no parent ever wants to hear: Levi’s liver wasn’t processing bile correctly, and he will very likely need a liver transplant—and time is of the essence. What began as concern over a lingering bruise on his lower back escalated quickly when their pediatrician noticed yellowing in his eyes and a bloody scratch in his nose that wouldn’t heal. After a harrowing night at VCU Children’s Hospital, the family finally landed at Medstar Georgetown University Hospital, a facility renowned worldwide for successful pediatric transplants, where Levi underwent scores of medical tests and where he was officially diagnosed with PFIC2—a progressive disorder usually discovered in infancy and marked by the buildup of bile in liver cells leading to liver failure. Now, the family continues to take it day-by-day to learn more about both the severity of his condition and the scope of his treatment; As Liz says, “The best outcome [now] is a liver transplant, if not a miraculous healing” and “the worst outcome would be death (before transplants were available many babies were taken home by their parents to die).”

...unlike any other organ donation, liver donation does not require removal of the entire liver...

Baby Levi has large brown eyes that shine with excitement in most of the photos that the family has shared on their YouCaring site, where they are trying to raise $50,000 to cover hospital and surgery costs. So far, over 140 donors have pledged over $16K towards their goal, many of them anonymous well-wishers who, like me, are drawn towards Levi’s magnetic smile and perfect round baby cheeks. In less cheerful pictures, Levi’s eyes are weary and afraid, he wears a tiny hospital gown and there is blood crusting his nostrils—evidence of his clotting issues. These are the photos that make your heart race with the urgent desire to help. And, while monetary donations are a huge assistance, there are so many other ways to donate, including medically.

Unlike any other organ in the body, the liver regenerates. Therefore, unlike any other organ donation, liver donation does not require removal of the entire liver, rather surgeons remove a piece or “lobe,” and a living donor’s organ restores itself to full size and function within six to seven weeks of the surgery. Unfortunately, just like any other organ donation, recipients who qualify for this life saving surgery are most often entered onto a national transplant list—and it can be an agonizing wait. After many tests and evaluations, qualifying recipients are placed onto the list based on (among other factors) their age, blood type and size. Donors can be either living or deceased, but studies now suggest a slightly higher success rate for living donation. As with any organ donation, currently, there is a shortage of donors both living and deceased.

The Colon family is now waiting to find a living donor or they will be at the mercy of this system.

If you meet the following criteria and are interested in donating a portion of your liver to Levi, please call Marissa at (202) 444-1130:

• Age 18-55
• BMI under 30 for men and 32 for women
• In general good health
• Drug Free

None of this serves to minimize the many risks related to any surgery—much less one involving a vital organ—however, if anyone reading this feels compelled to get tested for possible organ donation, please visit our website, fredericksburgparent.net, to learn more. Likewise, as we approach the holiday season, consider becoming an organ donor, if you aren’t one already. Simply visit www.DonateLifeVirginia.org and with a few clicks you could save so many lives. And, to continue to follow Levi’s story, please visit the Facebook page @LiverforLevi.

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