Flynn’s one in 1.2 million diagnosis
To mark Rare Disease Day on February 28, Laura Winter shares the remarkable story of how her four-year-old son, Flynn, has survived an extremely rare blood cancer diagnosis.
In late 2017, the Winter family, including dad, James, and seven-year-old big brother, Xavier, were living a blissful and simple life on tropical Christmas Island.
“Flynn then started to get rashes that would come and go, a bloated stomach, and would often get colds which would last a lot longer than his brother,” explained Laura.
“I thought it was all a bit off, but I never even considered leukaemia.”
When Flynn came down with pneumonia, a blood test finally revealed the devastating truth and the family needed to be airlifted to Perth to start urgent treatment.
“We had to leave our home, our friends and our life behind almost immediately to begin the fight of Flynn’s life. It was like a rug was pulled out from underneath us,” said Laura.
After arriving in Perth, a chromosomal test confirmed Flynn’s diagnosis as a rare type of blood cancer called juvenile myelomonocytic leukaemia (JMML).
“JMML is incredibly rare with one in 1.2 million diagnosed,” explained Laura.
“I’m an avid researcher and when we received the diagnosis, I spent hours and hours trying to understand everything I could about JMML.
“Getting a rare diagnosis can be very isolating and uncertain as the research, treatment and statistics are changing all the time.
“The treatment team was, of course, very good at explaining everything, but, in the end, we only had one option: Flynn would need a bone marrow transplant.”
Flynn had a bone marrow transplant at just 18 months old from an unrelated donor as his brother wasn’t a match.
Even then, the road forward for Flynn was complicated as he developed graft versus host disease (GVHD) within weeks of the transplant, which attacked his liver, skin, and gut. GVHD is common, and sometimes serious, complication of a transplant, where some of the donor’s immune cells try to reject the patient’s own cells as foreign.
“We pretty much lived in the hospital for most of that year after the transplant,” remembered Laura.
“He’s been on a huge journey with so many ups and downs but he’s a very resilient, amazing boy.”
Because of Flynn’s age, Laura says it is unlikely he had any concept of what was happening to him throughout that year.
“He couldn’t have been thinking about the next day, or what was going to happen to him,” said Laura.
“Although, because he was so young, it was also a problem because we couldn’t explain what was happening.
“We just tried our best to keep him active, happy and smiling through it all and focus on the positives.
“The side effects were so horrific, but, for him, it was really just one day at a time.”
For the rest of the family, grappling with the realities of Flynn’s diagnosis was deeply affecting and they too focused on taking each day at a time and learning from others who had been through the same thing.
“Whatever would help us on that day, we’d find it,” said Laura.
“I got in contact with other JMML parents across the world, finding online support groups to ask questions and make me feel less alone.”
“I know first hand that when you’re in the midst of it, it’s really hard to find hope some days, so to hear these stories and to see others who are on the other side of it all can be really inspirational.”
Flash forward to today, the family has just celebrated three years since Flynn’s transplant.
He now looks like any other cheerful, bubbly, and healthy four-year-old. Although he was unaware of the severity of his circumstances at the time, today Flynn is very aware of how special he is.
Now thriving, he doesn’t quite understand why he needs to go back to get his blood tests every two months.
“He says, ‘Why am I getting this test, Mum? Why am I going to hospital?’ and I just tell him, ‘To show how strong and golden your super blood is!’”
Life for the Winter family might have been transformed forever, but Laura’s confident that Flynn can grow up and experience life like any other kid.
“When he was immunocompromised, he wasn’t allowed to go to playgrounds or playgroups as any infection or bacteria could be a deadly threat,” said Laura. “He was very much in isolation at home for a good year.
“But now, life is as normal as it can be as he continues to regain his strength and heal his body. We’ve stayed in Perth for the time being and he’s started kindy this year. We are so grateful.”
The family are now passionate about raising awareness of JMML and hope to see an improvement in future research and support.
“It is difficult with rare diseases to get funding for research and make real progress with new treatments,” said Laura.
“With JMML still only having about a 50% cure rate, the beautiful future children diagnosed deserve better outcomes.
“My hope for the future is that increased research would lead to targeted therapies, so that not every child would need to go to transplant to be cured.
“To potentially be able to avoid such a toxic procedure would be a huge step forward.”
Laura’s advice to others with a rare disease diagnosis:
Don’t be afraid to ask questions. I found it really empowering. Don’t think of it like you’re questioning your specialist’s authority, you are just getting it clear in your head for you and your child. Be sure to lean on others for support, and always, always keep hope.
Read Laura’s first-hand account of Flynn’s diagnosis, ‘When things in life cannot be changed…they can only be carried’, on her website The Wellness Lane.