At nearly 3 years of age, Adelyn Troutman has become a kind of lightning rod for Ahwatukee.
Suffering a rare genetic disorder called Diamond-Blackfan anemia – which prevents her body from manufacturing red blood cells – she requires a blood transfusion every month just to stay alive.
Her parents, Matt and Kami Troutman, have tended to her through this agonizing cycle 40 times – since she was 2 months old. And the only way she can break it is with a bone marrow transfusion.
Her parents also organize a blood drive twice a year because they know the importance of an adequate supply of blood for the greater community.
That’s where the lightning rod comes in for the little girl, who turns 3 on Saturday, Oct. 27.
At their first blood drive in Ahwatukee in November 2017, the blood drive garnered 55 units. Last April, the second drive yielded more than twice that amount. It has become the biggest blood drive in Ahwatukee and one of the largest in Phoenix.
The second drive for the year will be 8 a.m. to 1 p.m. Dec. 1 at Desert Foothills United Methodist Church, 2156 E. Liberty Lane, Ahwatukee, and Adelyn’s dad is hoping it can set a new record again. Appointments can be made at bloodhero.com.
Helping to coordinate the drive is Denise Savoy, owner of The Village Preschool, which shares the building.
“Since the thing that keeps Adelyn going strong are those generous people that donate blood, we continue to host these blood drives in her honor,” Matt said, noting that United Blood Services has increased its staffing for the next drive “to accommodate even more donations.”
Adelyn’s condition and prognosis have not changed in the past year, and he said “the treatment is going as good as it can be.”
“Her transfusions are still spaced three to four weeks apart and she still takes the same dosage of her iron chelation medication. The most important thing is that the chelation is working,” he said, referring to the therapy that removes excess iron from her blood so that her liver and heart are not damaged.
“She had an MRI in August to check the content of iron build up in her liver and heart, and while the heart has always been good, the level in the liver has always been high, which is our primary concern as that can lead to organ failure with very little warning,” he said. “The MRI revealed that the level has dropped from 12.8 in May of 2017 to 10.1 in November of 2017 to 6.7. This is extremely encouraging to us as well as her incredible team of doctors and Phoenix Children’s Hospital.
“Her results are still abnormal as normal rates are between 0.17 and 1.8,” Matt added. “This will be the most important thing we will need to continue to monitor as long as she requires blood transfusions, which will be her entire life barring a medical miracle.”
Despite her challenges, Adelyn is a typical 3-year-old.
“She loves swimming and dancing and is always showing people her beautiful smile, and I think that is also one of the things that is so inspiring. She is given life from other people’s generous donations and she absolutely lives it to the fullest,” her father said.
The Troutmans “are so amazed by how our daughter’s story has inspired so many people to donate blood and save lives,” Matt said. “People contact us from all over the country asking questions about how they can help with blood donation and we are so thankful for that.”
“When we started, we didn’t realize the impact this could potentially have, but think of these facts: 4.5 million Americans would die each year without life-saving blood transfusions, and approximately 32,000 pints of blood are used each day in the United States. Every three seconds, someone needs blood and one out of every 10 people entering a hospital needs blood.
“The thing that puts it all in perspective is that just one pint of donated blood can help save as many as three people’s lives. Every person that walks through those church doors on Dec. 1 will make a huge impact.”