Mikey is 5 and loves all things police and can't wait to grow up to be a police officer. Mikey is also a Lego master! After every cancer screening his family has a ritual where they go to the Lego store to buy a small Lego set. Needless to say they are drowning in Legos! He is funny, smart and full of energy. There isn't much he doesn't like... unless of course it's a green vegetable!
When Mikey was 1 year old his parents noticed his legs appeared to be different sizes. His mother brought it to the attention of the pediatrician at his 1 year well check and told the pediatrician that she also has the same issue. They were referred to a geneticist at a local children's hospital who specializes in Beckwith-Wiedemann Syndrome (BWS). Both Mikey and his mom were was given a clinical diagnosis and sent off to CHOP to meet with Dr.Kalish. Dr. Kalish entered them into a study she is doing and took samples. Mikey's mom, Samantha, was later confirmed to have hypermethylation at H19.... one of the rarest types of BWS.
Since Mikey was given a diagnosis of BWS at 1 year old they have followed the strict protocol of AFP blood testing and abdominal ultrasounds every 3-4 months. When Mikey turned 3 the blood testing dropped off but the ultrasounds continue every 3-4 months.
Mikey is a hero because despite everything he is a happy and funny boy! He trucks through every one of his appointments with a smile on his face! He is always thinking of others and never turns down the chance to grab an extra sticker for his twin sister! Samantha, his mom, hopes and prays Mikey grows up to be a strong, confident, healthy man. He is a strong resilient boy and he deserves the best!
Quote from Mikey's sibling: "You're my best friend, you're ALWAYS in my heart!"
Information provided by Samantha Schleper, Mikey's mom