Alex 20 mo

    Alex – Beckwith-Weidemann Syndrome

    Alex had a really rough start. He was born September 13th, 2010, and was immediately admitted to the NICU at Texas Children’s Hospital to deal with a bad heart. Luckily his parents knew about this before he was born, so they were as prepared as possible. That night he was placed on a ventilator because the drugs caused him to stop breathing, and later the docs discovered that he couldn’t maintain his blood sugars. After 6 months, 3 heart surgeries, many other “procedures”, not being able to eat, then only eating through a feeding pump, and numerous other complications, he was diagnosed with Beckwith-Weidemann Syndrome – a genetic disorder that has all sorts of issues. One of the things these kids are pre-disposed to is a couple of types of cancer so they are regularly screened. Alex’s first screening showed a lump on his liver. At this point he was still so sick from his other complications that we needed to deviate from the usual chemo protocols because we really didn’t think he’d survive it. Working with Dr. Pat at Texas Children’s Cancer Center and Alex’s team of doctors, we came up with some workarounds and this little Super Hero pulled through. Between chemo sessions, Alex got to come home for the first time when he was 8 months old. During his next 8 months of in- and out-patient treatment, we discovered 4 more little lumps all around his liver and were advised that he really needed a liver transplant. Good news – he’s so sick that he’ll probably get a liver really fast. Bad news, he’s so sick he probably wouldn’t survive the surgery and recovery. Well, we made the hard decision to choose Door #3 – find another way to deal with the new additional lesions, keep going with some maintenance chemo, and count on this little man to pull his super strength and heal himself with lots of help from prayer and medical attention. Alex is now 3 years old and continues to show us all what a strong kid he is and will continue to be. He’s over a year and a half in remission and his screenings continue to show good results.


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