A story of hope for those who are feeling frustrated or scared about their SNC.

My sister was born with CdLS, Cornelia de Langue Syndrome. When she was born, the doctors told my parents that she would not live through her first year. That if she happened to, she would never talk, walk, think, etc. They told her that her best option was to put her in an institution and move on. She had multiple health issues, was deaf at birth and has severe physical and mental disabilities. 

My Mom totally disregarded the doctors and worked really hard with her - PT, what would now be considered early intervention, she fought the town where we lived for resources for handicapped children, the school districts to find a good place for Megan and she taught her sign language.

When she was around a year or so, she could suddenly hear, which was really a miracle.

Megan, though her chronical age is 30, is socially around 10 years old and mentally around 3 - 4. She can write and read her name but that's about it with the reading or writing and she does not do any math.

We just recently celebrated Megan's 30th birthday with a HUGE blow-out surprise party. Megan was on that floor, holiding a mike, singing along with the band, dancing her little ass off and having the time of her life. She greeted every single one of the 100+ people that were there to celebrate her life and she remembered every single one of them by name - we're talking about her Physical therapist from when she was a toddler, teachers that she had in school 15+ years ago, our neighbors from our first home ...

It was an amazing celebration and just goes to show that there is always hope. Yes, Megan lives in a special home with around the clock care because of her needs and she's been deathly sick numerous times. But, she lives a happy life with so, so many people who love her and are there to support her.

Megan truly is a success story. The doctors were SO far off with their predictions and for that we thank God every day. So, when you get bad news from your doctor in what they think the future will hold, think about how quickly medicine changes and the resources that are available expand. Think about all of the things that your child CAN do and then think of Megan, who according to the Drs, has lived on borrowed time for 30 years. But, don't tell her that - she's to busy living her life and touching the lives of others.

xoxoxoxo
Ramsey