Charlotte and Her Family Find Daily Joys Despite Severe Epilepsy Diagnosis
Shortly after Charlotte was born, her parents decided to make a list for her – a collection of things they wanted her to experience and places they wanted her to visit. They also reached out to family and friends for items to add. Soon, a 68 item list was born – appropriately titled “Charlotte’s Joy List.”
“It started because we felt like we missed out on the joy of a new baby and the milestones,” said Tracy. “It was our way of recapturing the joy. And when the severity of her illness became clear, we wanted to make sure that she experienced as much joy as possible in her life.”
After an EEG showed that she was having over 400 seizures a day, Charlotte spent three months in the hospital while they worked to manage her seizures. She was soon diagnosed with a mutation of the SCN2A gene – one of only 150 children with this diagnosis. PHS provides respiratory care and home care nursing for her, and we are proud to feature another story about her amazing accomplishments alongside the recent feature by the University of Minnesota Masonic Children’s Hospital.
Despite her severe form of epilepsy, two-year-old Charlotte has a list to accomplish and has recently been training for number 46 on the list – run a marathon.
A team of support
This spring, Tracy told her friends that it was time to start focusing on Charlotte’s joy list – and the Twin Cities marathon would be a good opportunity to cross another one off.
“They looked at me like I was crazy, and suggested that maybe we should just do a half,” said Tracy. “But I said nope, we’re doing a full marathon. And I don’t run, but I can’t let Charlotte do it and not complete it myself – so I had a lot of training to do as well.”
Tracy was soon connected with myTEAM TRIUMPH which is an organization comprised of athletes who push individuals with physical or mental limitations through athletic events. Along with her athlete, Charlotte will be joined by a nurse to ensure she has the medical attention and cares she needs throughout the race. Charlotte will also have a physician friend biking along the route with her equipment in case a need arises.
As friends and family members heard about this race, a team of runners has formed and will be tackling the marathon on October 9 as Team Seize Your Joy – a reminder to everyone there to focus more on the joy of everyday life.
“We are trying to teach people that there is joy despite sadness, and little things can bring joy,” added Tracy. “There’s joy in the everyday, and we believe that can be contagious. I lost my father unexpectedly last year, and that took my joy a little bit – but I feel like this marathon has given me my drive back to refocus on finding my light and purpose.”
So far, the team has raised almost $4,000 for the SCN2A Foundation while also spreading awareness about severe forms of epilepsy.
Preparing for the long run
Training has been a double effort for this family as Charlotte trains with her athlete and nurse while Tracy trains for her own run.
“My only goal is to finish. Finish for Charlotte,” said Tracy. “When my training hurts and is hard, I think of everything she’s been through – and it makes me thankful that my body does what I tell it to do. Hers doesn’t. That’s the motivation for my running, my fundraising, and my advocacy.”
Charlotte has completed training runs with her athlete and nurse as they work out the kinks in the process, finding adjustments to make to ensure the run as smooth as possible for everyone. The latest problem to solve? Finding a way to jimmy rig a mirror onto her stroller so the nurse can see Charlotte’s face as they run.
“She loves movement – I think it’s cool for her to feel wind on her face, and the sensation of movement like that. It’s not something she’s been able to experience often,” said Tracy.
There is no doubt the team will be a well-oiled machine by race day having practiced stops for medication administration and evaluation.
The most memorable of the joys
For Tracy and her family, every day is about making a good memory and finding joy in the smallest things.
“I remember when we went 2 weeks without being in the hospital, and just being so happy to be in our home as a family,” remembered Tracy. “We take joy in just sitting in the backyard. It isn’t necessarily the big thing that stand out.”
But there are some especially memorable joys on the list, include going camping (it just took a little creativity in the setup), going trick-or-treating as Shrek characters (the green face paint Tracy used dyed her face), and going kayaking in September of last year (especially memorable as it was Tracy’s dad’s last time with Charlotte before he passed away earlier this year).
Charlotte’s big sister Sophie also finds joy in spending time with her little sister.
“She’ll lay there and say, ‘I love her so much,’” said Tracy. “She likes to play nurse and help me do cares, and recently when Charlotte was having a seizure, she found foot cream and rubbed her feet. There is so much love between the two of them.”
Up next on the list
While some of the items on the joy list are simple like playing with pudding, others are more complex – like taking a trip to Hawaii. And following the marathon, that’s just what this family is doing. After going there for their honeymoon, Tracy and her husband wanted their daughters to experience the trip and the feeling of swimming in the ocean (which also happens to be #2 on the list).
“Although she is constantly having seizures throughout the day, we’ve decided not to let that stop us from making memories as a family,” said Tracy. “While I think the instinct might be to keep her at home, she is going to have seizures no matter where she is – so we still think it’s important to take her out to experience meaningful moments and find joys around her.”Originally published: September 28, 2016