Since Victoria was 6 months old she suffered from refractory epilepsy, which meant that her seizures could not be controlled by any medicine. Her parents, Claire and Andrew, were running out of options and agreed to introduce a new anti-epileptic medicine called vigabatrin to attempt to finally stop their daughter’s devastating seizure episodes.
This medicine came with some risk, but with few options left Victoria’s parents and neurology team decided to move forward. Unfortunately, after only a short time on the new anticonvulsant it caused toxicity in her brain, which severely affected her motor skills.
“We had two MRI’s and stopped her medicine immediately, but by then it was too late.” Victoria’s mom Claire told us. “She was in NICU for about 30 days, as her heart was also affected from the brain motor cortex damage.”
Her parents were obviously crushed by this unexpected and unfortunate turn. Soon Victoria began to lose a lot of her physical skills she was just starting to master like sitting, grabbing, vision, eating and even controlling her body temperature. She also began to display sudden involuntary movements, clinically known as chorea, which is derived from the Greek word “dance.” It was a lot for Vicky’s parents to handle but they pushed forward and kept searching for answers.
Victoria relaxes so much in her new swing from Holton’s Heroes that she actually falls asleep in it.
Now, 4 years old, Victoria’s brain damage and seizures still affect her every day life. Her parents continue to exhaust their options to gain control of the epilepsy, as it keeps their daughter in an almost perpetual state of pain and discomfort.
“We’re always scratching our heads because we couldn’t figure a way to please her. I didn’t see her smile for more than a year,” Claire bravely told us. “Then, [one of her teachers] discovered that a swing provided what Vicky was looking for, as it helped her stay calm and provided an outside activity that was missing before.”
Holton’s Heroes was able to gift Victoria and her family a custom swing set for their back yard, complete with an adaptable swing chair for Victoria to safely and comfortably use for years to come. Due to the spread of COVID, Vicky’s dad Andrew had to construct and install the whole kit with the help of some close relatives.
“This whole process is so much more than a swing for us. It’s provided unforgettable family time building and planning together,” Claire told us. "There are plenty of swings on adapted playgrounds, however due to her heat tolerance and weak immune system, we are not able to make it out to the playground too often.”
Most importantly, this swing has had a truly positive effect on Vicky’s home life. Due to the pain she suffers, called neuro-storming, she’s not able to get a good nights rest often, as she will literally scream and cry until she loses her voice.
“The swing seems to help ease her nuero-storming pain significantly. She literally will immediately stop crying once she’s on the swing. I tried so many things but nothing seemed to work until this,” Claire admits. “I felt like failed parents so many times. So, in a sense, you saved her from pain and saved me as a parent, too.”
Well, as anyone who’s made it this far in the article knows, Vicky’s parents are the farthest things from “failed parents,” but instead they are an inspiration to parents everywhere. Their love and perseverance is admirable and we are in awe of their fortitude.
We are so happy that Victoria can comfortably enjoy this new swing set under the shade of trees in her own back yard. Mom, dad, Vicky and her new little sister Ella can all enjoy these moments together, especially during these unprecedented times.
“It’s finally providing a family activity that we could all do together. We will forever cherish these moments and thank Holton’s Heroes each and every time.”
On Father’s Day in 2017, 2-year-old Josiah was running around his home, excitedly zooming from room-to-room , as he typically did. However, in a matter of seconds he managed to elope out of the back door undetected and make his way to the family pool. Read Josiah’s amazing tale of recovery now.