Will knows Home Alone by heart and laughs in anticipation of the movie’s antics. Much to his mother’s chagrin – and like many other 14-year-old boys – he cracks up when he gets a sneak of the TV show Family Guy.
“Doctors told me he would just be vegetative state. He’s done things they never thought he’d be capable of,” said his mom, Melissa Sams. “They told me he would not live to be an adult.”
Will was born with hydranencephaly, with fluid in his brain preventing development beyond his brain stem. But his bright smile, contagious laughter and high-fives confirm his place in Melissa’s life and heart each day.
“The first couple of years, we basically lived in the hospital and we had a few close calls,” noted Sams. “I would not wish the stress on anyone, but I wouldn’t change it for the world.”
The stress of caring for a child with complex needs is a burden Sams knows well, as she has journeyed through health systems, bills and resources mostly on her own since Will was an infant.
That changed in June 2019, when Will became one of the first patients enrolled in Bright Path, a new pediatric palliative care program started by Bluegrass Care Navigators. Bright Path includes a clinical team who only treats kids – and supports the whole family through the physical, emotional and spiritual ups and downs of a serious illness.
“They have moved mountains that I haven’t been able to move in fourteen years,” said Sams. “As a special needs mom it’s just a huge weight lifted off. I can tell a big difference in my stress level.”
Bright Path clinicians serve as an extension of a child’s specialty medical team, providing clinical care in the home in hopes of reducing emergency care episodes and hospital visits. In addition, the team can help families connect with community resource to further reduce the stress of caregiving.
“I can focus on Will instead of what doctor to call or how to get the equipment we need,” said Sams.
Andrea Haggard said that big part of her job is making families smile again.
“Our program is giving these kids back their childhood. It is really heavy, what these families are dealing with. And it’s not just about the child. It is the whole family and they are dealing with so much,” said Haggard, who is an Advanced Practice Registered Nurse for Bright Path.
Providing medical care in the home and helping families navigate the complexities of our health system are critical components of the program. But, Haggard said, Bright Path also makes a big difference by providing consistent, family-centered interactions.
“We go in and treat each family member as an individual, not just as a sick family. We try to remove that isolation,” said Haggard. “And in Will’s case, we can’t forget that he is a fourteen-year-old boy!”
While it’s impossible to know what the future holds for Will, his mom hopes for fourteen more years – or more.
“I just want him to be happy,” said Sams. “We still have a long journey ahead but Bluegrass Care Navigators is making the road easier.”
If your family or someone you know could benefit from Bright Path palliative care, visit www.bgcarenav.org/brightpath. If you would like to make a donation to our Bright Path program, please go to give.bgcarenav.org/bright-path.