Alpha Stories

Published on Tuesday, March 20, 2012

Angel without Wings

Angel without Wings

Skylar Haynes simply loves to fish – she likes it better than playing with Barbies, better than painting pictures, better than dancing – and if you get to know her even a little bit, and you begin to see why.

Fishing requires patience, determination, and above all unbridled optimism—qualities that Skylar shows way more than a typical six-year-old. After all, when you’re fishing, staring over the water, you need to remember that a whole other world lies beneath the placid surface, just out of sight. And you keep believing that the next nibble will bring a big catch.

When Skylar fishes, she wears a surgical mask and rubber gloves to guard against infections. She doesn’t bait her own hook for fear of a finger-prick. And besides her fishing rod, she carries another kind of pole—one to support the Mic-Key tube that provides nourishment 24 hours a day.

At birth, Skylar had four holes in her heart, an enlarged spleen, and a liver twice normal size. At eight weeks, she was diagnosed with Alpha-1- related liver disease. At age two, she underwent a liver transplant. Although her heart eventually healed without surgery and the transplant cured her of Alpha-1, Skylar has fought through a host of other health problems, including recurring infections at her incision site and acid reflux so severe that it necessitated extraction of her teeth. She still fights pancreatic insufficiency, a condition in which her pancreas fails to produce enough enzymes to process food for proper nutrition.

Skylar faces all this with the spirit of a true angler— patient, determined, and relentlessly positive. “Skylar never loses her smile,” says her mother, Marquette. “Nothing holds her back. There are no obstacles that she can’t find a way over, under, around, or through. It’s that attitude that inspires me.” It inspires plenty of other folks, too. Since her life-saving transplant, Skylar and her mom have dedicated themselves to raising awareness of Alpha-1 and organ donation.

Second Family

Marquette confesses that she knew absolutely nothing about Alpha-1 before her daughter’s diagnosis. But she hooked up with the Alpha-1 Association and Alpha-1 Foundation through the Internet and quickly found more than information. She found a second family.

“If it weren’t for the Alpha-1 Foundation, I don’t know what we would’ve done,” says Marquette. During the critical weeks surrounding Skylar’s transplant at University of Miami-Jackson Memorial Hospital and her subsequent hospitalizations, the staff at the Foundation’s Miami headquarters took the Hayneses under their wing. “John and Diane Walsh [the Foundation’s CEO and his wife] personally helped us in so many ways,” says Marquette. “We grew to love them. Once, they even did our laundry!” Then she adds with a smile, “I could tell John did it himself, because our socks came back on hangers.”

The Haynes’ second family soon grew even larger. Skylar and Marquette eventually met Lisa Gahagan, Skylar’s donor mother. After a tragic incident in the family swimming pool claimed her four-year-old son Tyler and threeyear- old daughter Amber, the grieving Gahagan had signed the consent forms making her children organ donors. It was Amber who became Skylar’s donor and savior.

“It still amazes me that after not being able to save her own children, she thought of someone else’s,” says Marquette. After that first bittersweet meeting and some initial awkwardness, both mothers recognized the special bond they shared. “Lisa told me that for a long time she felt as though she was drowning herself,” says Marquette. “But just knowing that her daughter had saved my daughter saved Lisa, too.” Now Marquette and Skylar talk with “Momma Lisa” by phone at least once a week.

A similar selflessness drives Marquette to volunteer. “If whatever I do saves even one child, then it’s worthwhile,” she says.

Watch Out, Vanna

Ask Skylar what she wants to be when she grows up, and she’ll tell you, “I want to be a transplant surgeon to help other kids and I want to be a mommy.”

Then again, a career in TV might be calling. As the manager of a 94-unit apartment complex in North Carolina, Marquette often shows prospective tenants around, accompanied by Skylar. “She loves to point out all the features in every apartment,” says Mom. “She’ll say, ‘Here’s the dishwasher, here’s the disposal.’ She’s getting very good at it—almost like another Vanna White!”

What Others Can’t See

In fact, Skylar has always shown a talent for pointing out what grown-ups might miss. For example, Marquette remembers her daughter’s friendship with Deanna Blackwell, a girl just two years older than Skylar. They met at the Jackson Memorial Transplant Center. During their frequent hospital stays over the course of two years, the girls became fast friends. Deanna and Skylar would play with their Barbies and sculpt with Play-Doh, tethered to their IVs.

As it happened, Deanna needed a second transplant, and she received it while Skylar was also hospitalized. Deanna’s second attempt did not go well. She spent days in intensive care, slipping in and out of consciousness. Days after Skylar’s surgery, she would shuffle down the hall and wait outside the pediatric ICU, hoping to catch a glimpse of her friend through the unit’s swinging doors.

Deanna didn’t survive the second transplant. Marquette faced the impossible task of telling Skylar that her best friend had died, and she struggled through her tears. But Skylar didn’t cry right away. She said, “Mummy, don’t cry. Deanna didn’t die.

The Lord just gave her wings.” As Marquette recalls, “In her five year- old heart, she felt that all of us— children and adults—we are all angels here on earth. We’re waiting for our wings.”

It’s a lesson that Marquette Haynes learns every day from her daughter, the fishing enthusiast. You cast your line with patience, love, and hope. The prize catches surely lie out there under water, even if you can’t see them. You just keep believing until you reel them in.

Article first published in Alpha-1 Magazine in Fall 2004