We are the Perkinson family. A Midwest born and raised family who chose to make The
Upstate home in August of 2021. We have 6 kids and this is the story of our baby girl.
Rachel’s story started 9/16/2016 when she was just 2 year old. We traveled to China
to meet our daughter and bring her home. We were told she had seizures and that they
were minor and were controlled by meds.
When we got her, it was obvious that it was not minor. This sent us on the journey that
we are on today.
Rachel was hospitalized shortly after getting in the states to just run test and get a
baseline assessment. We discovered she has a low grade glioma as well as many
areas of dysplasia. We had her care transferred to a Childrens hospital in St Louis, MO
that specialized in seizures. There was no visible cause for the type of seizures she
was having. However, as she grew older, we noticed that she was experiencing
frequent seizures and different types. We tried many different medication combinations
and various therapies to gain control.
In this time Rachel was diagnosed also with Global developmental delay. She was not
progressing age appropriately in all areas of development and was not speaking. She
started all the therapies we could get into. Years of med changes and therapies and we
were not seeing significant improvement.
Rachel’s care was transferred to Chicago where a world renown surgeon was now
Chief of Pediatric Neurology to start discussing brain surgery. After consulting with
doctors, we learned that Rachel had a rare seizure disorder that would likely not
respond to meds.
In May 2020, Rachel underwent a risky brain surgery to treat her seizure disorder. It
was a dangerous surgery with long lasting effects. Rachel underwent a
hemisphereotomy. In short, Rachel’s 2 hemispheres were going to be disconnected
from each other and this would result in loss of the use of her left side of body. After 40
days in the hospital for surgery and rehab, Rachel has learned to walk again and has
adapted to the use of just one arm. She is truly a miracle.
The surgery was a success in so many areas. We are meeting many new milestones
and her speech is improving significantly. It is amazing to see the resiliency in our kids.
Although this journey was not easy, and sadly our seizures returned after 9 months of
freedom, Rachel is a happy, energetic and loving little 8 year old. If you meet Rachel
today, she will greet you with a smile. She loves her siblings big time and loves to try
and make people laugh.