At just over 15 months, Adelyn Troutman of Ahwatukee looks full of life. But that life drains out of her in a few weeks, forcing her to undergo a monthly blood transfusion. For a look at Addy’s plight and how you can help,
Adelyn Troutman can look and act like any tyke nearing 16 months of age.
The Ahwatukee toddler is effusive, bubbly and full of life.
But as the month wears on, that liveliness seeps quickly from her.
She takes more naps, rapidly loses her child-like enthusiasm and becomes paler with each passing day.
Eventually, she must be taken to the hospital, where doctors stick a needle in her little arm to give her a blood transfusion. Otherwise, she will die.
This is Addy’s cycle.
Her parents, Matt and Kami Troutman, have tended to her through this agonizing cycle 20 times – since she was 2 months old. And the only way she can break it is with a bone marrow transfusion.
“We can definitely tell the signs as the month goes on,” Matt Troutman said. “Once it starts to happen, it happens quick.”
Addy suffers from a rare genetic disorder called Diamond-Blackfan anemia, which prohibits her body from making red blood cells.
Those cells have a relatively short life span, so by the end of four weeks after her last transfusion, they’ve all died off, forcing the need for another 200 to 240 millimeters of blood.
“Basically, all new blood is the same age,” her father said.
It didn’t take long after Addy was born for her parents to see there was something wrong with their little girl.
“When Addy was born, she was extremely anemic and stayed in the neonatal intensive care unit for 21/2 weeks,” Matt Troutman explained. “The doctors could not determine at that time what was the cause. They gave her transfusions and we eventually went home thinking that everything was fine. After two months, she seemed extremely pale so we brought her in to our pediatrician and he took one look at her and sent us directly to Phoenix Children’s Hospital.”
That’s when they got her diagnosis.
“We didn’t have a lot of information beyond a name,” he recalled. “We had to figure out what that really meant. At first it didn’t fully sink in.”
When it did sink in, it changed the Troutmans’ lives in many ways – some for the good and some not so.
Beyond the agony of watching their daughter undergo her monthly transfusions and her steady loss of energy that leads to the next one, there are also the mounting expenses.
It costs $3,500 to $4,000 for each transfusion, and Troutman, a web designer whose contract job recently ended, is covered right now by an expensive COBRA policy while he looks for new work.
Then the bone marrow operation looms ahead, and he hasn’t even looked into its cost.
“We already have a big pile of bills,” he said. “With the transplant, we can’t even imagine the cost.”
Right now, however, he and his wife have more pressing concerns – mainly, finding a donor with the right blood match.
And if they find a match and Addy undergoes the bone marrow transplant, she faces months of recovery – including up to six weeks in the hospital.
The Troutmans are awaiting results on tests of their son and other daughter, hoping one of them will have a compatible blood type.
But because Diamond Blackfan Anemia is genetic, the two children also need to be tested to make sure they don’t possess the mutated gene that causes the disease.
If they do, then the Troutmans have to hope a donor will emerge from the bone marrow network managed through bethematch.org.
The Troutmans know their situation is hardly unique, and they have launched a campaign to drive awareness of the bone marrow donor program, hoping people will consent to having a swab taken from their mouth and then registered in the national database for other people like Addy.
“Right now, the main goal is to find her the perfect match,” Matt Troutman said. “he better match we find, the less dangerous and risky the whole procedure will be.”
“Registering as a donor is very quick,” he continued. “It takes about five minutes and all you need to do is a quick form and a swab in the mouth, and once you register, you are on the registry for life. We advocate to please register and help save a life – if not Addy’s, then someone else like her who desperately needs it.”
They have already become regular blood donors as well and are encouraging others every chance they get to do the same.
“When we started thinking about how Addy depends on those transfusions, we went out and started attending blood drives,” Matt Troutman said. “It opened our eyes, knowing we now have a baby who depends on these kinds of events to keep her alive.”
They’ve also been moved by the kindness of others to their and Addy’s plight.
At first, friends and neighbors were helping, but as word has spread beyond them, total strangers are coming to their aid.
“We are so overwhelmed by the love and support so many people are showing as we start this crazy journey,” he said. “We didn’t want to bother people with our problems, but we discovered many people want to help. Ahwatukee has been really, really great.”
To see if you are a match for Addy: http://join.marrow.org/Match4Adelyn