“All things excellent are as difficult as they are rare.”
Calvin is the definition of strong, brave, determined & RARE.
We welcomed Calvin into this world on 12/16/2020. We waited to find out his gender until the day he arrived. In addition to finding out we were blessed with a beautiful little boy we learned that his birthmark put him at risk for Sturge-Weber syndrome.
He was immediately scheduled for a series of appointments throughout his first 6 months of life. As parents we spent countless hours researching, wanting to desperately understand what his future may hold. He had an MRI in July 2021 to determine if he had brain involvement indicative of Sturge-Weber syndrome. Hours after his MRI we arrived home & he had his first stroke-like episode followed by a cluster of seizures which resulted in a 9-day stay at our children’s hospital.
We were in & out of the hospital due to uncontrolled focal seizures from July to December 2021. In those five months, Calvin’s seizures were long & very difficult to stop. Medication was increased, added, stopped, and his rescue plan was adjusted. It was a blur of hospitalizations, therapy, fear & trying to adjust to a new normal as a family.
His MRI at 7 months old showed that only his right hemisphere was impacted by Sturge-Weber syndrome so we actively pursued surgery in an attempt to give Calvin a chance at seizure freedom. We met with many doctors & ultimately traveled to the Children’s Hospital of Michigan in July 2022. Our plan was to have a PET scan, updated MRI, meet with the surgeons to agree on a surgery plan & then proceed with surgery if no unforeseen circumstances presented. The day after his PET scan & MRI we met with the surgery team & learned Calvin has bilateral involvement. As he was older, his latest MRI showed he has some minimal involvement in his left occipital lobe. The team recommended an anatomical hemispherectomy of his right hemisphere as that entire hemisphere is impacted.
We made the difficult decision to not proceed with surgery at that point in time. We felt that learning his involvement was bilateral & knowing that he was in his longest stretch of seizure freedom we had to take a pause. Our goal was seizure freedom & coming off medication & those two goals were likely unattainable so we needed more time as a family to enjoy his happy, healthy stretch.
When we returned home from Detroit we followed up with his neurologist in Pittsburgh & scheduled an extended EEG. Calvin started to walk independently & expanded his vocabulary. However, we started to have concerns in late September due to setbacks in his mobility & captured a few videos for his neurologist of sudden head drops. He had an extended EEG on 10/16/2022 which showed he had multiple seizures which were noted with a slight body jerk or head drop. Due to the development of atonic (drop) seizures, one of his medications was increased, which was ineffective. We added Epidiolex & his neurologist referred us back to the Neurosurgery team to discuss VNS placement. The Epidiolex does seem to be working, but we know we were only detecting a portion of his atonic seizures so it’s hard to say with full confidence if it has completely stopped them. We will have another extended EEG in the months to come & have met with the surgeon to discuss VNS surgery.
In the meantime, Calvin has regained his strength, continued to expand his vocabulary & recently completed a 3-week intensive therapy program.
Calvin’s story is heavily focused on seizure control. However, in addition to that he has also received multiple laser treatments on his birthmark & continues to be monitored for glaucoma.
Thinking back to those first few months with Calvin, we know we wanted answers that don’t exist. We understand now that even today we are unprepared for what the future holds, but we hope & pray that Calvin is blessed with a happy, full, long life.
He is the most affectionate, happy & silly little 2-year-old boy. He loves his sister more than anything in this world & we truly cherish the happy, healthy days we have together as a family.
Thank you for reading,
Natalie
