Grace, now five years old, was born with a very rare syndrome called Robinow syndrome. There are only 200 cases in the world.
She has the dominate form, but has all the traits of the worst kind. She was missing pieces of her spine, and we couldn’t find a doctor in Florida to fix her. We looked everywhere.
We finally found a physician in Philadelphia: Dr. Robert Campbell, one of the creators of the VEPTR (vertical expandable prosthetic titanium rib), which has saved Grace from a life in a wheelchair.
There is not a lot of information available on Robinow. We are aware of only 26 doctors: 20 here in Florida and the team in Philadelphia. Grace is truly amazing and is always smiling. Grace has had brain, stomach, ear and seven spine surgeries, and these will continue until she is 17 years old.
In 2010, she had her first surgery on her back. It is going to be a long road. But God has a plan for her and us. We have met the most amazing families on our journey, and we will meet many, many more.
When Grace was born, they said she wouldn’t live through the night; won’t walk, talk or be able to eat by herself; and on and on. Grace is now five; she walks, talks and eats— and is the happiest child I know.
Her strength amazes everyone that meets her.