Parents create 'joy list' for sick toddler

Tracy Umezu is determined her daughter Charlotte will experience joy despite her severe epilepsy.
Tracy Umezu is determined her daughter Charlotte will experience joy despite her severe epilepsy. Photo: Facebook

Welcoming a new baby into a family should be a time filled with joy. But Tracy and Junji Umezu missed out on much of that rite of passage for new parents when second daughter Charlotte was diagnosed with a rare form of epilepsy shortly after birth.

The little girl, who is now two years old, has a form of epilepsy called SCN2A, and has spent much of her life in hospital.

"Basically, it's a problem with the sodium channels in her brain and it causes her to have seizures constantly," Tracy, from Minnesota, told TODAY Parents.

Dressing up as a princess with her big sister.
Dressing up as a princess with her big sister.  

"She is by far one of the more severe cases. She has struggled the whole two years of her life with uncontrolled seizures and complications that go along with that like respiratory problems and issues with her bowels. She has spent a good majority of her life in the hospital."

While Charlotte's future is uncertain, the Umezus have vowed to make sure their daughter's illness does not prevent her from experiencing as many joyful things in life as possible.

Together with their four-year-old daughter, Sophie, the couple has come up with a "Joy List" of things for Charlotte to experience and are working their way through it together, crossing off things as they go.

The list includes simple things, like sliding down a slippery dip, to big achievements, such as finishing a marathon.

"Some of the things on the list are really simple," Tracy said.

"They're things you maybe wouldn't think would bring you joy, but we just wanted to make the focus on the fact that you can experience joy in the little things, too."

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The latter was made possible thanks to an organisation called My Team Triumph which helps disabled people run in races. Along with Tracy, a relay of runners pushed Charlotte's stroller for the length of the run.

"I wanted Charlotte to feel the sensation of running and to feel the wind on her face," Tracy told TODAY Parents.

"She can't walk, so to have somebody give her the legs to do that was important to me."

Tracy and Charlotte on a big slide.
Tracy and Charlotte on a big slide.  

They don't know what the future holds for Charlotte, but for the moment the family is focused on working through the list.

Among the experiences yet to be ticked off are a hot air balloon ride, sledding in the snow and a trip to New York City.

"We don't know her prognosis - it's probably not very good - and we don't know how long we will have her," Tracy said.

Tracy and Charlotte enjoy a canoe ride.
Tracy and Charlotte enjoy a canoe ride. Photo: Facebook

 "We wanted something to focus on to make sure she experiences as much in life as possible in the time she does have. We'll keep checking things off the list as long as we have Charlotte with us.

"We hope to bring awareness to her condition through the joy list, and also to help people take a moment to realise that there is joy in the little things and that even when life is hard, bad or difficult, there is still joy."

Charlotte's treating medical team is in awe of the family's positivity.

"When it became apparent that we were not going to turn this disease around, they decided to focus on making certain that her life was not simply spent in a hospital, but rather that they would have family memories," paediatric neurologist Dr Gerald Raymond told TODAY Parents.