VINTON–According to his mother Ashleigh, Mason Moses “is a five year old ball of energy, wide open, quick-witted, funny, and a lover of life in general.”
“He is a typical rough and tumble boy who loves the outdoors, dinosaurs, Minecraft, Superheroes, and Hot Wheels cars,” said Moses. “Mason has a heart for others, gives the best hugs around, and picks the finest flowers in the world–aka dandelions–for me every chance he gets. His laugh is infectious and you can’t help but smile when you hear it.”
He is also in the early stages of diagnosis for a very rare genetic disorder called Fanconi Anemia (FA), an inherited disease that can lead to bone marrow failure and cancer. Though considered primarily a blood disease, FA may affect all systems of the body.
According to the Fanconi Anemia Research Fund, on average only about 30 infants are born with Fanconi Anemia each year in the United States.
Indicators of FA for Mason were his small size and failure to gain weight and “some small underlying factor that they couldn’t put their finger on.” Additionally, he had small brown spots on his body known as café au lait spots. He also was born with an extra digit which was removed when he was eight months old.
Last fall at his five year check-up, his doctor referred him on to a gastroenterologist. Blood work indicated that his red blood cells were extremely large and that his platelets were relatively low for his age. He was then referred on to Carilion Hematology/Oncology where he received the Fanconi Anemia diagnosis in January.
The family will travel to Cincinnati on June 30 for an initial appointment the following day with specialists in hematology and endocrinology as they develop a treatment plan. The Fanconi Anemia Comprehensive Care Center at Cincinnati Children’s is one of only four in the nation to work with pediatric FA patients.
Moses says that as the Fanconi progresses Mason’s immune system won’t be able to tolerate being around “so many germs” but that at the moment he should be able to continue enjoying the normal life of a five year old boy for the most part, as recommended by his physician.
He will be a first grader in the fall. Mason loves his church and church family at Vinton Baptist where he is active in the children’s ministry, sings in the choir, attends Sunday School, and plays on the basketball team.
At this point Mason is not on medications; his blood levels are just monitored. Some of his activities, like contact sports, are being put on hold as he awaits a bone marrow transplant. A donor match was not found in his family (among parents and sibling), so an unrelated donor needs to be located.
“Mason will have to undergo multiple tests and screenings yearly,” said Moses. “He also has his blood drawn every three months to check his levels and to make sure they are stable and not dropping. He is monitored by hematology, oncology, endocrinology, gastroenterology, and his primary care physician.”
“He will have yearly bone marrow biopsy/aspiration done to check the health of his marrow,” she added. “He will also have a yearly ultrasound of his liver, kidneys, and heart as well as an MRI of his head and neck. All of those tests and screenings monitor his levels, but also scan for any tumors that may form.”
Moses says that Mason is “very inquisitive” and so when he was diagnosed he wanted to learn everything about the disorder and the procedures he would undergo during the course of treatment. Her explanation to him was that his “blood is sick and the doctors are doing their best to make him well.”
She says he has been very tolerant of all his appointments, the blood draws, and numerous tests.
“Mason is the kind of kid who wants to know how each procedure is done,” said Moses. “He will ask me to Google it so he can see. The first time he had an IV put in for his MRI, he basically walked the nurse through what color IV needle he would need, how they would remove the needle, and that the tube would still be in place for the fluids.”
She says the nurse offered Mason a job that afternoon.
‘He is aware that Fanconi can lead to cancer and he tells me that makes him nervous,” continued Moses. “He sometimes will state that he wishes he ‘didn’t have the Fanconi’ as he calls it.”
A donor drive was sponsored by Exalted Ministries on April 30.The procedure for registering as a bone marrow donor is pretty simple. You merely have the inside of your mouth swabbed and fill out a registration form. Anyone ages 18 to 55 in good health can be a donor.
Kimberly Duncan, donor recruiter at “Delete Blood Cancer DKMS” says that her organization is “part of the world’s largest network of donor centers. Our mission is to build the number of suitable bone marrow and stem cell donors because we believe that no life should be lost due to an inability to find a donor match. We have registered more than six million potential donors and facilitated more than 55,000 transplants around the world.”
Moses reached out to the donor organization which she discovered while doing research on Fanconi Anemia, once the family determined that they were not matches for Mason.
There will be a benefit night at Abuelo’s restaurant at Valley View on Monday, June 27, from 5 to 9 p.m. to raise funds for Mason. Twenty percent of all ticket sales that present Mason’s flyer will be donated to the family for medical expenses and travel.
“I explained to Mason that this is just part of our journey and that we have to believe and have hope that everything is going to be okay,” said Moses. “It’s hard to have to discuss these things with a five year old, but I believe in being open and honest and answering all of his questions to the best of my ability.”
For more information or to register as a bone marrow donor, visit www.DeleteBloodCancer.org/
“Those who register as a potential donor have a chance to save him and others like him,” said Moses.
Exalted Ministries has established a fund in Mason’s name found online at www.exaltedministries.org/.
There is also a Facebook page to keep up with Mason’s journey at Mason-Buddy-Fighting-Fanconi-Anemia.
