The Robinson Family Story

Ana, born 2006

Maite Robinson shares the story of her daughter, Ana:

One of the first things parents learn about their special needs babies is that they possess incredible courage. Our Ana is no exception: she suffers from Pelizaeus-Merzbacher-Like Disease and still meets every day with a smile.

Ana was born with a cleft lip that required surgery when she was 5 months old. It was during our preparation for the procedure at Texas Children's Hospital that a nurse noticed the symptoms. She pointed out Ana’s head bobbing and nystagmus and recommended we see a Geneticist. This led to our discovery of Ana's PMLD. 

While Ana was never able to walk, she soon was scooting around the house by “bunny hopping”. Going down the steps was no problem for her either: pretend to be a board and slide down head first, laughing hysterically as you go. 

We are careful with everything, as Ana is fearless, loves to thrill, and nothing seems dangerous enough to her. 

PMLD is a relentlessly progressive disease. As time passes, her abilities to speak, hop and eat without choking have diminished. The disease has given her seizures, ataxia, spasticity, scoliosis, and a long list of other symptoms. 

At each turn, Ana has met her new challenges with persistent determination and courage. Somehow, she remains cheerful and positive. It seems the only thing Ana finds too difficult is managing her parents!