By Jeannie Blaylock
First Coast News
JACKSONVILLE, FL — When you meet the Flynn family you see a young Navy couple very, very, very busy. Dad is at NAS Jax and Mom is full-time handling those little spats kids get into daily.
To top off their load they have twin babies.
Doreen Flynn, though, has a calm attitude. But she carries a deep well of emotion.
This is where the story turns into a heartbreaker. But there is something simple you can do, by e-mail, to help them. Words of encouragement can do wonders. (The family’s e-mail address is at the bottom of this article.)
Here’s why the Flynn’s could use encouragement now. Their first daughter, Jordan, seemed to be fairly healthy but small for her age. “She was tiny, real tiny and she was wearing size twos,” Doreen says. At the time Jordan was four. So doctors ran a battery of tests and eventually found the problem.
Jordan has a rare, genetic blood disorder called Fanconi Anemia. Information for the family was scant. Even the brochure at the doctor’s office was two years old and the family was basically told, “We don’t know a lot,” Doreen remembers.
According to the Fanconi Anemia Research Fund about 1000 cases are documented now worldwide.
Experts there say the disease puts children at a “drastically” higher chance of getting cancer.
Unfortunately Doreen and her husband were both recessive carriers of the Fanconi gene but had no idea.
Doreen says doctors have told their family Jordan will likely get some type of cancer. It could be leukemia or liver cancer or head and neck cancer or vaginal cancer. Her odds of getting cancer are 700-fold higher than other children.
The hope is Jordan could have a bone marrow or stem cell transplant. But her best match would be a sibling. So the Flynns struggled with the decision to have another baby.
They decided to try a procedure called Pre-implantation Genetic Diagnosis. Doreen says, “The procedure had been around for seven or eight years.”
They wound up with four embryos and did genetic testing of each one. A lab in Detroit put out the report, which said one of the embryos was disease free. The baby would grow up without Fanconi’s. One would be a donor match to Jordan and the other was labeled, “disease status unknown.”
So the Flynns called the genetic expert on his cell phone. “He said he was pretty sure it was 99.9% Fanconi free and if it were me I’d take it. So we took both embryos,” Doreen says.
Their twins were born at 34 weeks. They named their new daughters, Julia and Jorja.
Then the bad news came. Their twins, both of them, had Fanconi’s. The family now had, not one, but three children who would likely have to fight off cancer.
What’s more the twins can’t donate to Jordan either because they have Fanconi’s themselves.
Doreen’s eyes fill up with tears when she talks about the twins. “I tell them I’m sorry. We brought them into this world.”
Of course, all moms are prone to carry heavy guilt even when something bad isn’t their fault.
For Doreen her faith is one source of strength.
She says she’s gone to church her entire life and she knows God has some plan. Has she figured it out? No. But she believes it’s true.
So what went wrong? Why did the twins have Fanconi’s when they were supposed to be disease-free? Doreen thinks perhaps the embryos were mixed up and they were given the wrong ones.
There is hope. But it’s a tough road. The girls will be on a bone marrow registry and the Flynns hope they can find an exact match for them. That will increase their odds of beating whichever cancer comes their way. Without the transplants the life expectancy for a Fanconi patient is age 20.
The other positive note is the girls are young and there are many years of science, and many believe miracles, to help them live a healthy life.
Here’s how you can help. You can e-mail the family words of encouragement.
The Flynn’s e-mail address is: dflynn518@yahoo.com
The family has lived on eight different Navy bases and so hearing support from people on the First Coast would mean the world to them.