LAND O’ LAKES, Fla. (WFLA) – A Tampa Bay area mother is continuing to fight for a cure for Cystic Fibrosis after losing her son to the disease at a young age. She made him a promise as he lay in a coma.
Sherry Jackson knew something was wrong with her second child, Michael, when he was born in Sept. 1997. Michael was coughing a lot, didn’t gain weight and his mother noticed something was off when it came time to change his diapers.
“Right off the bat I knew something wasn’t quite right with him,” she said.
She continued to take him to the doctor but, at 4 and half months old, enough was enough for Jackson. She and her son were sent to Johns Hopkins All Children’s Pediatric Pulmonology.
“Immediately, it’s strange, they asked if they could lick him,” Jackson explained. “Children with CF have a salty-tasting skin. So they kind of knew right away what it was. So they did what is called a sweat test which confirmed the diagnosis. I had never heard of it myself.”
That’s where the quest to find out anything and everything she could about Cystic Fibrosis began. The disease is hereditary, and Jackson learned from her father she had three cousins who passed away from CF when knowledge about the disease was even less common. Each parent has to carry the defective gene for a child to have CF. There is a one-in-four chance of a child developing CF in this instance, Jackson said.
Upon Michael’s diagnosis, Jackson got in touch with her local chapter of the Cystic Fibrosis Foundation. She learned about the foundation’s main fundraiser, the Great Strides Walk.
She began fundraising for the next walk that very year.
“My very first year, this is back before we had social media, so I had to actually go knocking door-to-door, so to speak, for donations. I raised a few thousand dollars my first year,” Jackson said.
The walk turned into Michael’s favorite event, despite what he was going through medically.
“As my son grew, he looked forward to this day every year. That was just his favorite event, he knew it was about him, he was so excited for it. So when he progressed and became sicker I promised him when he was in a coma in [UF Health Shands Cancer Hospital] that I would not stop until it was done,” Jackson said.
Michael passed away in 2012 at the age of 15.
His passing has not stopped his mother for fighting for the cure for Cystic Fibrosis. She focuses mainly on the Great Strides Walk to raise funds, sticking to Michael’s favorite event.
While Jackson doesn’t have to go door-to-door anymore thanks to the internet and her fundraising page where family, friends and even strangers can donate to the “Michael’s Miracles” team, she also does a little fundraiser herself that has proven successful.
“Something that I do on my own is I actually purchase a designer handbag and a wallet, whether it be Coach, Michael Kors, something like that. Because it kind of appeals to everybody,” she said. “Because even if it’s a guy, you might want it for your mom, your wife, your girlfriend. So we raise quite a bit of money doing that by doing raffle tickets.”
Her rotary club, Holiday Rotary, also makes a donation each year when someone from the Cystic Fibrosis Foundation gives an update on where the world is for a cure at a meeting.
A cure for Cystic Fibrosis seems ever more attainable, thanks to what Jackson calls a “miracle drug,” known as “Trikafta.”
The drug targets the defective gene in a child and is approved for 90% of the CF population, according to the FDA. It’s not technically a cure, but Jackson said it’s proving helpful to providing more normal lives in CF patients.
“These kids now plan a normal life, so to speak. They’re going to college, they’re making plans to get married. I just read a story the other day about a young girl who had her sweat test redone and she was actually normal, no detection of CF, which is just unbelievable. So we are so close, but we’re not quite there yet,” she said.
It’s also painful for her, as Michael passed away before the FDA approved Trikafta for use in patients 12 years or older.
“It’s crushing. My son had two copies of the Delta F508 [mutation] which was the first kind of round, so to speak, that Trikafta was approved for. So unfortunately, it came too late for my son, but I’m thrilled knowing that myself and others who fundraisers and Achieva, we’re playing a part in saving lives,” she said.
“I think he would say, ‘mom, well done.’ I really do. He had a ton of faith. He really was not afraid. When we went to Shands, our goal was to get him a double lung transplant….” she said. “He obviously didn’t want it. Obviously mom obviously wanted it more than he did. But he didn’t want it. He wasn’t afraid. He was very comfortable with where he was at. I take comfort knowing that he’s no longer suffering and that he’s with Jesus.”
The Great Strides Walk for the Cystic Fibrosis Foundation will feature several virtual components this year and registration remains open.