Ally Little described the past month of her life as a nightmare from which she “just can’t wake up.”
On Dec. 22, the University of Southern Maine soccer player learned she had a rare and life-threatening disease in which her bone marrow stops producing healthy blood cells. However, the words “severe aplastic anemia” meant nothing to Little at the time.
“It’s really hard because I didn’t know what this was before I had it,” said Little, a 20-year-old sophomore from Stoneham, Massachusetts. “No one has really heard of aplastic anemia or what the treatment is.”
A bone marrow transplant is the cure for this disease, and Little has yet to find a matching donor. Little’s teammates have organized a bone marrow donor registry drive from 9 a.m. to 1 p.m. Wednesday at Abromson Mezzanine at the USM Portland campus and from 2:30 to 5:30 p.m. at Costello Complex at the Gorham campus.
Diagnosed during winter break, Little broke the news to her teammates on social media.
“It hit home,” said USM women’s soccer coach Lisa Petruccelli. “This is really the first time someone their age at this juncture is struggling with something like this.”
Little’s initial symptoms didn’t seem serious. She started getting “pounding headaches” around Thanksgiving, but she had gotten headaches before. Physical activities such as skiing or working out for soccer became unusually exhausting, which Little attributed to dehydration. She didn’t go to her doctor until she noticed blood in her stool.
“(Aplastic anemia) is believed to be an autoimmune system gone wrong,” said Paul Scribner, Senior Director of Patient Advocacy Programs with the Aplastic Anemia and MDS International Foundation (AAMDS). The disease usually results from the destruction of bone marrow stem cells by the immune system. Other symptoms include infections and the tendency to bruise and bleed easily. With such innocuous warning signs, Scribner said “a lot of people find out when they go to their doctor because they’re feeling run down.”
After bloodwork, Little was told that her results were “very abnormal.” She spent the next few days in the hospital undergoing tests while doctors prepared her for the worst case scenario – leukemia.
“That was obviously horrifying,” Little said. “We didn’t find out until about three days later that it was severe aplastic anemia.”
Aplastic anemia is rare and can occur at any age. In the United States, about 600 to 900 people are diagnosed each year, according to AAMDS. The disease is considered “severe” when all three types of blood cells – red blood cells (carry oxygen), white blood cells (fight infections) and platelets (help blood to clot) – are very low in number.
“I was kind of relieved it wasn’t cancer,” Little said. “Then, doctors explained to me that it’s really not that good. It was devastating.”
Little couldn’t go back to school. With her compromised immune system, crowds are off limits. She can’t play contact sports or do anything that could put her at risk of internal bleeding. She gets blood transfusions every week, and she can tell when she’s due for another by the dizziness and headaches she gets. The long-term risk of too many transfusions, Scribner said, is iron overload.
“Most days, I feel OK,” Little said. “I don’t really feel sick, which is good. But it’s hard to remember I can’t do certain things.”
Little is buying time until she can get a bone marrow transplant. Bone marrow is the spongy tissue inside of the bones that produces the body’s blood cells. She didn’t find a match among her family or with Be The Match – a national bone marrow registry that contains 22.5 million adult donors.
Registering at the drive is simple. Potential donors must be between 18-44 years old and fill out basic paperwork and get their cheek swabbed to have their tissue type added to the registry – a process that takes just a few minutes. After that, they will remain registered until age 61, unless they withdraw.
However – for those in need of bone marrow – finding a perfect match is not so easy.
“Think about Megabucks and how hard it is to match that,” said Jackie McLoon, Assistant Account Executive with Rhode Island Blood Center as well as a bone marrow donor. McLoon, a representative with Be the Match, has helped the USM soccer team organize its drive. “Everyday, there are donors getting added to the database. Hopefully, her match shows up one of these days.”
Potential donors also can register online at join.bethematch.org.
Only 30 percent of patients in need of a marrow transplant have a matching donor in their family. Be The Match helps the 14,000 patients a year who suffer from leukemia, lymphoma or a variety of bone marrow functioning diseases. McLoon said a protein called human leukocyte antigen (HLA) is used to match patients with donors, and potential matches will then undergo bloodwork to determine if they would be a good fit. Only about 1 in 500 registrants go on to actually donate marrow.
“There are 10 things that they are supposed to match,” Little said. “They think one of my 10 is very rare.”
But her teammates are optimistic. On Saturday, they attended a home basketball game clad in T-shirts adorned with the phrase: “All for Ally.” They gushed about Little’s kind personality and reminisced about all the times they crashed in her room.
“She’s the best teammate ever. She’s so sweet – oh my god, I love her,” said Jessica Preble, a sophomore on the team. “If you ask anything of her, she’ll drop everything and do it.”
“This team is kind of used to bad things happening to our girls,” said Dayna Staffiere, noting that one of their teammates lost her dad at sea last season when the cargo ship El Faro sank after encountering Hurricane Joaquin. “It just brings us all closer.”
When Little isn’t at the hospital, she’s usually working on her online classes or walking her dog. She said the support from family, friends and her soccer team is what keeps her going.
“We’re the ones who are supposed to be strong for her, but she’s so strong for us,” Preble said. “Just a cheek swab and some paperwork could help save her life.”
Taylor Vortherms can be contacted at 791-6417 or
tvortherms@pressherald.com
Twitter: TaylorVortherms
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