Even though she won’t turn 2 until Oct. 27, Adelyn Troutman has seen the inside of a hospital more times than most adults.
The Ahwatukee tyke has endured 25 blood transfusions – a monthly ordeal necessitated by a genetic affliction called Diamond-Blackfan anemia, which prohibits the creation of red blood cells.
Initially after the transfusion, Addy is as full of life as any healthy child. But as the days pass, she tires. If it weren’t for the transfusions, she would die.
People moved by Addy’s plight can help by donating blood at a special drive to be held 8 a.m.-1 p.m. Nov. 4 at Desert Foothills United Methodist Church, 2156 E. Liberty Lane, Ahwatukee.
“She is a perfect example of why it is so important to donate blood,” said her father, Matt. “There are so many people like her that need blood on a regular basis as well as all of the people that need blood in emergency situations.”
When she has had a transfusion, Addy “is a happy, full-of-life little toddler, and that is all made possible because of blood donations,” her father added.
Right now, any bone marrow transplant is on hold.
“The transplant is on hold as we monitor her Iron content,” Matt Troutman said. “Iron overload is our main concern right now as each blood unit contains a lot of iron, which builds up in the liver and can cause liver failure if not controlled. She takes iron chelation drugs to control this, but the only way to know whether it is working is with an MRI.
“She has one scheduled on Nov. 3, which will help us determine if she can go longer on blood transfusions or if she needs the bone marrow transplant sooner,” he added.
When Addy was born, she was extremely anemic and stayed in the neonatal intensive care unit for 21/2 weeks.
“The doctors could not determine at that time what was the cause,” her father said. “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.
She has unrelated matches on the registry so far, Troutman said.
“When we started thinking about how Addy depends on those transfusions, we went out and started attending blood drives,” he said. “It opened our eyes, knowing we now have a baby who depends on these kinds of events to keep her alive.”
“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.”
Donors can also go here to directly link to the appointment page: https://www.bloodhero.com/index.cfm?group=op&expand=783608&zc=85048&oti=2