Dopamine-Responsive Dystonia (DRD) -
Tyrosine Hydroxylase Deficiency (TH)
Nicolas was just 10 months old when his parents noticed the symptoms
of his movement disorder. He wasn’t developing as a typical baby should,
which led them to consult physicians around the country and eventually
led them to the specialists at Children’s Brain Care Institute.
A neurologist and movement disorder expert provided the Griffiths
with Nicolas’ complete diagnosis, while adjusting his medications
and therapies to fit his needs. He also worked closely with Dr. Elizabeth
Tyler-Kabara, a neurosurgeon at Children’s who has an extensive
background in movement disorders and spasticity. It was their unique
collaboration that resulted in the decision to implant a deep brain
stimulation device to limit Nicolas’ uncontrolled movements. The surgery
required approval from the Food and Drug Administration because at the
time of his surgery, Nicolas was the youngest patient in the United States
to receive this sort of implantation. Nicolas’ quality of life has significantly
improved, and he is becoming increasingly independent.
“From the first visit we had with our doctor, he gave us hope.
He said that Nicolas was at a doorway, but the door is shut
and we need to open it and go through.”
– Dawn Griffith, Nicolas’Mother
Stories of courage.
We are inspired every day by the
resiliency, strength, and fearlessness
of our patients and families. Their
smiles lift our spirits. Their struggles
make us work harder. And their
ability to take on whatever life
throws at them gives us profound
hope in the future.