Leila's mother, Toula Porter, first reached out to us more than a year ago. Shortly before Toula emailed us in November of 2016, the extensive care her daughter Leila – a medically fragile child – demanded caused Toula to lose her job and eventually her family's home due to foreclosure. In the coming months, Leila, Toula, Leila's big sister Bella and Leila's father would be moving in with Toula's mother indefinitely. Holton's Heroes was on standby as the family adjusted in their soon-to-be new residence.
While hard to read, this is an all-too-often reality of dealing with a pediatric brain injury. It's not only a physical and emotional burden, but a financial one as well. One that can bankrupt a family, end a marriage, and push a parent to their personal brink. Fortunately for Leila, Toula and Jim Porter are resilient people, stellar parents and incredible life partners.
In February of 2015, Leila was born with a hole in her diaphragm among a litany of other congenital and organ-related issues. "Within 24 hours of being born, Leila went into surgery and they made an incision from her chest to her stomach to repair the hole in her diaphragm," Toula informed us. "[They] placed a gore-tex patch to cover the hole in her diaphragm and all her organs were moved to their appropriate place."
Only a day old yet sweet Leila was undergoing a multitude of intense operations unimaginable to most of us. The coming months would be equally harrowing, as there were nights where the Porters weren't sure if their baby girl would make it through to the morning hours.
However, six months later, Leila defied the odds and was discharged from the hospital. Finally, her parents could start their family life together at home. It's true, Leila had a tracheal tube and some serious health issues that demanded full-time attention, but Leila was cognitively fine—she was happy.
Less than a month after being home, as if a sixth sense was guiding her, Toula felt something wasn't right at home and checked in with Leila and her nurse shortly after a bath. Once Toula's eyes met with Leila's body, it was obvious something was wrong. Leila was blue and was somehow being deprived oxygen.
"The nurse did not drain the water from the ventilator tubing before she moved her [from the bath] ... and when she moved Leila, the water in her ventilation tubing drained down into her throat and essentially into her lungs," Toula described.
Leila and her family posing on their new access ramp provided by Holton's Heroes.
Ultimately, the fluid in her lungs caused 8-month-old Leila to aspirate, stop breathing and go into cardiac arrest. Leila was rushed to the hospital where she was treated and placed in intensive care.
"The next several weeks and months were heartbreaking to watch. Leila stared blankly at nothing, had brutal autonomic storming episodes—rapid breathing, sweating, agitation, abnormal and painful body posturing—in which we couldn’t even comfort her," Toula admits. "There is nothing harder when a parent can't comfort their child."
Our hearts broke upon hearing Leila's story and obviously we wanted to help in a big way. There are many needs for the Porter family right now, but we all decided an access ramp (pictures below) for a growing Leila and her wheelchair would be the best gift we could give at this time.
It took a few months of scheduling, permitting, and planning, but through donations to Holton's Heroes, we were able to build a custom-made access ramp for the Porters that—with some effort—can even be moved to a new location one day. Thank you to Milestone Building Company and Matthew Credit for planning and building such a terrific access ramp.
While we are happy to give the Porters one less thing to worry about financially, they are still in need of other services and devices that insurance and government programs won't provide. In particular, a specialized vehicle to transport Leila safely in her wheelchair. If you'd like to donate directly to the family, they've started a GoFundMe page here.
“Our amazing baby girl has endured so much in her short life already and we are beyond thankful for our little miracle who continues to fight so hard everyday.”
We are Holton's Heroes, a 501(c)(3) nonprofit dedicated to helping pediatric brain injury survivors get the tools they need to succeed in recovery.
Holton's Heroes sponsored three incredible campers to attend the 2018 summer session of Camp Cranium—a camp dedicated to providing a one-of-a-kind experience for children with brain injuries.