When Mark and Kelly Dees of Land O’ Lakes decided to name their unborn daughter Hope, it was a sign of their unwavering optimism despite devastating news.
What was supposed to be an exciting reveal of their baby’s gender, soon became a moment of sadness after Hope was diagnosed with congenital heart defects.
“We were told by the first doctor that she wouldn’t live to see her first birthday,” Kelly recalled.
But now, at age 13, Hope has far exceeded that grim diagnosis.
Not only has she undergone multiple operations, she also recently had the chance to make her voice heard by the nation’s lawmakers on Capitol Hill.
Still, it hasn’t been an easy path.
A fighting chance
After hearing the initial troubling news about their daughter, the couple went to St. Joseph’s Children’s Hospital in Tampa, where a second diagnosis showed a brighter outcome.
Hope had a 92 percent success rate of survival, according to Dr. James Huhta, who still cares for her to this day.
She was born eight weeks premature with not only a weak heart, but a mild form of cerebral palsy, among other health complications.
At just 2 months old, she had her first open-heart surgery and spent several months recuperating at All Children’s Hospital in St. Petersburg.
Also, her esophagus did not connect to her stomach and had an abnormal connection to her trachea. This resulted in her being tube fed. Because of her complex situation, doctors waited until she weighed at least 4 pounds before performing corrective surgery.
Hope underwent two more heart surgeries, the second at 9 months old and the last at age 10. These were performed at St. Joseph’s Children’s Hospital.
She had other health concerns, too.
When Hope was 18 months, her parents noticed she was walking unusually.
Over the years, she has had to go through extensive physical therapy and orthopedic surgery on her left leg and foot.
“As she grows, the bone grows faster than the muscle,” Kelly explained. “The bone is growing and the tendon is pulling in because it’s not as long as the bone.”
Although Hope uses a leg brace for stability, she still may need another surgery.
Being in and out of hospitals all her life and getting to know medical staff, especially at St. Joseph’s Children’s Hospital, has become routine for Hope.
“This has always been her normal,” Kelly said of her daughter. “For me, it’s nothing but gratitude for all that they’ve done for her over the years, and all they continue to do.”
Speaking aloud for action
BayCare Health System and the Children’s Hospital Association have been working in conjunction for years to bring kids with medical needs to Washington D.C., for the annual Family Advocacy Day.
Amy Gall is a regional communications coordinator for BayCare Health System and has become Hope’s friend.
“We’ve been bringing a family up to meet with the legislators every summer,” Gall said.
Because Kelly is an advocate for protecting Medicaid for kids, Gall knew that Hope would be the perfect candidate to go to Capitol Hill with her family from June 24 to June 27.
Like dozens of other youth from around the nation, Hope had the opportunity to meet with congressional representatives from their respective states, and perhaps help to influence policy.
At Capitol Hill, Hope had the chance to meet with U.S. Senators Marco Rubio and Rick Scott. Also present were U.S. Representatives Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Darren Soto, Ross Spano and Greg Steube.
Along with Hope, Mark and Kelly helped address concerns about stabilizing health coverage for kids.
“As they are adults, taking responsibility of their own health care, it’s important that they have the coverage that they need and the assistance that they need,” Kelly said, in an interview with The Laker/Lutz News, after the family traveled to Washington D.C.
She said she wants assurance that when kids like Hope become adults, that they are guaranteed coverage and not discriminated because of pre-existing conditions.
Hope is currently on Children’s Medical Services, which falls under the Medicaid program.
There is a premium to pay, based on income, but the program has been helpful, Kelly said.
However, she said, a child must reapply annually, or the coverage will lapse.
One year, Hope’s paperwork was late, and she was without coverage for a month.
Changing that system was a topic presented to Congress.
“Some families can’t afford to just abruptly lose their coverage,” Kelly added. “It’s important that they are able to continue to afford their own coverage or doctor visits. It’s not cheap.”
Kelly said the reception offered by the federal lawmakers was sincere, and they appeared to be willing to see what could be done to help kids like Hope.
Still pressing forward
Even after everything Hope has endured, she still views herself as an average teenager, her mom said.
When she has free time, she practices the piano and goes swimming. And as she prepares to enter eighth grade at Dr. John Long Middle School, she plans to sing soprano in the choir.
While she was visiting Rep. Ross Spano’s office, he showed the family a sign engraved with the words: “Never give up.”
Kelly said she’s inspired by the same mantra — and, she added, that her daughter, Hope, has taught her the true meaning of those words.
Published July 24, 2019