Jimmie Tramel: Too-short life of child results in support for others

Life's too short.

Life's not fair.

But sometimes, wow.

Ginny Gamble's life lasted 6½ years.

Her mom, when asked, doesn't mind telling you about Ginny.

Ginny loved music and Elmo and swimming pools. She loved spending time with her family at home.

"She was the best," her mom, Melissa Bryce Gamble, said. "With all due respect to my husband who I love dearly, she was the love of my life. She was pure joy, pure love."

Ginny battled health issues during her too-brief life. She was born in 2008. Doctors spent the next two years trying to pin down a diagnosis.

"She had a lot of unusual, confounding medical conditions that nobody could really figure out how they were all connected," her mother said.

The answer was Peroxisome Biogenesis Disorder.

It's a rare genetic disorder and probably you've never heard of it, but all you really need to know is it's generally terminal in childhood.

Shortly after diagnosis, a specialist in Baltimore offered what proved to be great advice to Ginny's parents. Don't spend all your time in therapy appointments trying to "fix" your child. Therapy is important, but make sure the child has a good quality of life. Keep that child happy and healthy for as long as you can.

"That sort of set the tone for the rest of our four and a half years with her," her mother said.

Trips to the beach and the zoo became part of the family routine.

"And one thing that was crucial for her happiness is we had her in school, as much as she could be there," her mother said, adding that Ginny attended classes at the Little Light House and went to kindergarten at a neighborhood public school.

"Getting her around other kids, that was amazing for her. Giving her that kind of normal childhood experience of getting up and going to school, it was an awesome thing for her."

So, no regrets. The family embraced the specialist's advice to make the most of Ginny's remaining time.

But, as Ginny's parents were leaving the appointment with the specialist, Mom asked this: Who can you put me in contact with? Are there other parents out there in a similar situation?

"We were just a month into this diagnosis," she said. "I was kind of like a deer in the headlights at that point and really feeling like I needed to talk with somebody else who knew what I was going through."

The doctor put her in touch with kindred spirits. Mom began emailing other families during the trip from Baltimore back to Tulsa. She was disappointed to learn there was no organization to support the families or fund research to cure what their children were battling.

Her response: I'll do it myself.

Ginny's mom founded the Tulsa-based Global Foundation for Peroxisomal Disorders, a nonprofit organization that was incorporated in October 2010. Initially, the reach was an email group of 48 families "that had kind of pulled together." Now, GFPD serves 440 families globally, and it helps to know they're in this together as one big family.

"Giving families a way out of their isolation is incredible," said Ginny's mom, who indicated during a recent interview that the foundation knows of 175 children currently living with the genetic disorder.

Because October is an anniversary month for GFPD, events have been scheduled for an annual #PauseForPBD (Peroxisome biogenesis disorders) awareness day. Tulsa Pause partners (Lolly Garden, Ediblend, OkCookieMomster, Luxe and Carter Family Orthodontics) are accepting customer donations and offering customer specials Thursday, Oct. 5. And, from 5-8 p.m., the awareness day will be celebrated in downtown Tulsa at 36 Degrees North, 36 E. Cameron St.

Ginny's mom said the Tulsa organization is the only one in the world that funds and promotes PBD research and supports affected families.

Best-case scenario?

"Let me preface that by saying science moves at a glacial speed," she said.

"That can be disheartening for families sometimes. Really, when I started this, what I wanted was a cure for my daughter and the other children living with the disorder. But I knew at the time, once I got into this, that it was probably not likely. The thing that I hope happens is, 20 years from now when a child is born with this disorder, that they have a longer life, that they have a better quality of life, that we are able to provide a lot more in the way of treatments for that family and that child. I hope in 20 years we have so much more to offer these families so they don't have to go through what we have gone through."

Ginny's time on Earth was impactful, her mother said. She touched many people, just like other children who are afflicted. She pointed to a GFPD brochure with photos of other kids - a baby who lived four months, a boy who is well into his teen years, a little guy who is maybe 4 years old.

Ginny's mom was asked a "how do you feel?" question near the end of the interview.

Most days, she feels tired. In addition to being the person behind a foundation, she has two adopted preschoolers at home. She said her husband texted her a photo of Ginny recently with a message that read something like this: I know you get frustrated. Whenever you feel this way, just remember why you are doing this.

"That's a good reminder for me. Ninety-nine percent of the time I feel like we are making a real impact here and that helps give me some purpose. It has been a good thing for me to be able to focus my energy on. When you hear a doctor say your child is probably not going to make it to adulthood, that really changes you in some pretty significant ways."