About Grace's Condition

Grace was born with a dysgenesis of the corpus callosum, gross motor delay, spastic diplegic cerebral palsy, and DDHD2 related disorder. What does this all mean? 

The dysgenesis of the corpus callosum means that the corpus callosum - or the nerves that connect the right and left hemispheres of the brain - is under developed. This means that the 2 sides of her brain have had to adapt to a different way of communicating with one another. This causes some motor and cognitive delays and sensory sensitivities. 

The DDHD2 related disorder is hereditary spastic paraplegia (HSP) 54, or SPG54. SPG54 is a complicated form of HSP that is characterized by progressive spasticity and weakness of the lower extremities, among other symptoms. The condition is progressive and the rate at which it progresses varies. There have been less than 50 people that share the same diagnosis.

Shortly after her diagnosis, we were put in touch with Dr. Dody Robinson at Johns Hopkins to discuss whether Grace would be a good candidate for selective dorsal rhizotomy. After a short consultation, she was deemed to be an excellent candidate and we started the process.