A six-and-a-half-year-old child from Sault Ste. Marie who has serious medical conditions yearns to do something that’s a rite of passage for most kids as they grow up.
Leah Sperry eventually wants to ride a bicycle — but it won’t be cheap, as her bike would require a series of modifications that would allow her to ride with an IV pump, IV bags and oxygen tank, all while keeping the various tubes running into her body safe and secure.
As previously reported by SooToday, she was once known as the smallest cystic fibrosis patient in the history of Mount Sinai Hospital in Toronto. But a lot has changed since then: She now lives with congenital heart disease, bone marrow failure and needs to be on oxygen full-time.
“The cystic fibrosis is actually the easiest part,” said Heather Sperry, Leah’s mother. “It's actually so far down the list of diagnoses and problems that medical people even forget she has it.”
Leah has spent 1,139 days of her young life in hospital receiving inpatient care, and has been the recipient of more than 200 surgical procedures to date.
And while medical experts don’t know exactly what the root cause is, Leah’s entire gastrointestinal system and intestinal tract are not functioning properly.
“Right now she gets all of her nutrition, all of her hydration and all of her essential medications through a special IV formulation that goes through her chest wall directly into her heart,” her mother said.
Leah also requires around-the-clock care, which led to Heather quitting her job to be her daughter’s full-time caregiver.
But that’s not to say there hasn’t been progress.
Leah has been showing signs of improvement after intense daily physiotherapy, occupational therapy and speech therapy. She has also started walking without the aid of her walker within the past year.
“She has defied all odds at every turn. We never really expected her to get this far, which is amazing,” Heather said.
“Every day we just keep working at it, and she's surpassed all expectations.
“She's just phenomenal at how resilient she is.”
Leah now has a new goal: To ride a bicycle alongside her brother, Kevin.
“She so desperately wants to be with her brother and keep up with him — he's her best friend,” her mother said.
There are many options out there for a specialized bicycle, Heather added, but “none of them are inexpensive.”
“We have since found an option that will hopefully work a little bit better for her for now, but also moving forward to the future,” she said. “This one is coming in closer to around $6,000, but there will also need to be modifications and additional things added on to it.”
Last month, Leah’s aunt launched a GoFundMe campaign to raise money for the girl's bicycle and future medical expenses.
With a target of $25,000, the campaign has raised nearly half of the goal as of this afternoon.
“Everyone has really pulled together and supported us through all these years, and we really couldn't do it without all the help we've had,” Heather said.
More information on the fundraising campaign can be found on the GoFundMe website.