How One Family’s Journey Led to A New Currency for Care
In the summer of 2020, Flora and Duke Kim happily made the move from New Jersey to the Sunshine State with their daughter Serena and awaited the arrival of their second child. They were eager to start their next adventure as a growing family.
But that adventure took an unexpected detour.
When they welcomed their daughter Alexis fall of 2020, nothing seemed out of the ordinary.
“Lexi appeared to be completely healthy,” shares Duke. “All of her newborn screenings were normal.”
It was Flora who needed a little extra medical attention, staying at St. Joe’s for a few days due to some delivery complications.
“That was our first real experience with St. Joe’s, and we were impressed right from the start,” explains Duke.
The first few months after their daughter’s birth were hectic as the Kims were still adjusting to their new home, their new community, and their new family dynamic. When Alexis didn’t seem to be hitting the same physical milestones as Serena had, Duke and Flora tried not to worry.
“Even at a few months old, Lexi wasn’t able to really hold her head up, sit propped up, or even reach for things. Something just seemed off.”
So with their pediatrician, they kept an eye on Alexis’ progress, assuming she’d eventually catch up and knowing that in very young infants it’s sometimes difficult to determine what is normal and what isn’t as all babies develop at their own pace.
But when Alexis suffered her first seizure in March of 2021, the Kims knew something more was going on.
“It was more like she was having these small episodes where she would ‘space out’ for a moment and then vomit,” says Duke. “And her muscle weakness wasn’t improving.”
After a battery of tests, which included EEGs, video monitoring, MRIs, and genetic sequencing, the Kims learned their daughter was suffering from an extremely rare genetic mutation – GNA01 – which had only been identified less than ten years ago. Although relieved to learn their older daughter was not at risk because the mutation is one which occurs spontaneously at conception and not hereditary, Duke and Flora were understandably concerned about what the diagnosis would mean for Alexis’s future.
“We had never heard of it – probably because only 200 or so people in the world have been diagnosed with it,” says Duke. “It was a scary time, but at least we now knew what we were up against. We relied on our faith for strength and on Alexis’ St. Joe’s doctors for guidance.”
There is no specific treatment for the disorder itself. Instead, the focus is to treat the symptoms – the developmental delays, epileptic seizures, and progressive muscle weakness which most GNA01 patients typically exhibit. While medication can typically assist with the seizures, Alexis’ doctors wanted her to start on an immediate and intensive physical and occupational therapy regimen to address any developmental delays, build up muscle tone, and move Alexis toward age-appropriate cognitive and physical targets.
“As we watched them work with her and saw the progress she was making, it was clear they knew exactly what she needed,” says Duke.
The Kims also point out how St. Joe’s knew exactly what they and Serena needed as well.
“Something like this affects everyone. The support we’ve been given by St. Joe’s has meant so much to us. We feel blessed that we moved to the Tampa area when we did because it brought us to St. Joe’s, and we can’t imagine receiving better care anywhere. Not just the medical care but the way everyone here has fully embraced us on this journey. It has made such a huge difference.”
Because there are so few individuals diagnosed with GNA01, there are still many unanswered questions about Alexis’ prognosis. The Kims are taking things one day at a time and doing what they can for their little girl, and for other families with children facing such a life-changing diagnosis. That’s what motivated Duke and Flora to help ensure that children going through any kind of illness can continue to find the care and treatments they need right here at St. Joseph’s Children’s Hospital through a generous cryptocurrency donation – a first-of-its kind for St. Joe’s.
According to Duke, “The crypto community is an extremely charitable group of people and giving in crypto is a win-win all around. The donor gets a tangible tax benefit in the form of capital gains savings, and the organization gets the full weight of the donation. Flora and I hope our first donation to St. Joe’s with this unique giving option will pave the way for others to follow our example.”
At the start of Alexis’s medical journey, when she was undergoing her tests at St. Joe’s, Duke recalls walking down one of the hallways filled with the names of people who had supported the work being done there. He was grateful that those families’ gifts had supported his daughter’s care, and was inspired to pay it forward to others.
“When we thought about how best to show our appreciation for all that has been done for our family, I remembered that wall and knew we could really make an impact. It’s not about having our names there. We just want to help St. Joe’s make a difference in the lives of other children, just like they made a difference to Lexi. We experienced first-hand the blessing of being in a place that was equipped to help such a rare case like ours and we want to make sure everyone has that same opportunity. It’s all that matters.”