This is Lila’s story
We didn’t know at the joyous time of her birth, but our little girl, (now 3-years-old!) has an extremely rare genetic condition: Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome (MMIHS). It’s estimated that only 15-25 people with MMIHS in the U.S. are alive today.
Lila has been in and out of hospitals in multiple states since she was 10 months old, but amazingly, it hasn’t dampened our beautiful little girl’s spirit or lessened her enthusiastic love of life.
Most children with MMIHS die at birth or before they’re 1. We feel so lucky that Lila has a relatively mild case of MMIHS, but she still has a life-threatening, life-long, hidden disability. She’ll suffer from bladder and bowel issues and will need medical care for the rest of her life.
I have started to write her story from the beginning and will be posting it soon.
As a result an event was held in her honor to help raise money in her name, I was fortunate enough to attend the event. Aside from all the smiles on everyone’s face my favorite part of the day / event was that Lila is too young to really understand the reason for the event so she thought it was her birthday, we even sang her happy birthday. Man, is that going to mess her up later in life!
I know the event has passed but you can still help -> HOW TO DONATE: via PayPal at www.staystronglila.com or contact Sandy Martinez at 813-309-2395 or 813-681-2395