Family returning to St. Croix to find lifesaving donor
Published: September 27, 2013
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ST. CROIX - Tino Francois and his daughter Makailah are once again coming home to their roots, with hopes of finding a match for a possible bone marrow transplant that may save her life.
Francois' wife, Tamara Francois, is a native of St. Thomas who came home in June looking for a bone marrow donor for 4-year-old Makailah and conducted a bone marrow drive. Because no positive results have been found at this time, they have reorganized and are now turning to the roots of Makailah's father on St. Croix.
Father and daughter began traveling from North Carolina on Thursday. They were delayed and had to overnight in San Juan, but Tino Francois said he is still hopeful and excited to come back to the territory to raise awareness and hopefully find a match at the drive.
Screenings for a possible bone marrow match are scheduled for 9:30 a.m. to 3 p.m. Saturday upstairs on the eastern side of the Roof Top building in Castle Coakley.
In January, Makailah was diagnosed with a rare genetic blood disorder called Fanconi Anemia, which causes the bone marrow to produce abnormal blood cells and make an insufficient number of normal blood cells. Bone marrow produces red blood cells to carry oxygen through the body, white blood cells help fight infection and platelets help with clotting. People with Fanconi Anemia have an increased risk of cancer.
Those with the diagnosis might live only 20 or 30 years, but medical advances are giving people a much higher survival rate.
"We recently came back from a retreat in Maine, where we saw children who have a much more serious form of the disease, and we are thankful for her quality of life that she can enjoy now, but there are times when her count drops really low and that is scary," Tino Francois said. "We need to find a donor, and I am hopeful that we will here, where I'm from."
He said that most days Makailah is a very energetic child who loves to talk and perform. She loves playing with her Barbie dolls and looks forward to meeting new people.
"She is so full of energy and is warm and loving," he said.
While there is no cure for Fanconi Anemia, a bone marrow transplant would help prevent Makailah's bone marrow from failing.
The family lives in North Carolina, but both of Makailah's parents are from the Virgin Islands. When none of her immediate family members were a match, her doctors suggested looking for a donor here in the territory.
"We want anyone who hears of this drive or reads about it in the paper to come out and take a chance for Makailah," he said. "Everyone should think of it like it could have been your baby fighting to find that one person who could ensure a better quality of life and save her life."
The donor must fall into the 18-44 age group, and all that is required to find out whether someone is a match is a swab to the inside of their cheek.
"People get nervous because they think it will involve sticking them with a needles, but this does not," Tino Francois said. "It takes less than 10 minutes of your time to swab the inside of your cheek, and after that, that is it. You leave and we wait for results that take more than three months."
The drive is using the national marrow donor program, Be the Match, to look for donors.
Those who come to be tested will be given a swab and asked to swab the inside of their own cheek after registration. A few weeks later, they will get an email letting them know whether they are a match to Makailah.
Tino Francois said the journey to determine Makailah's illness and now trying to find a match for her has been a tough one and there are times when it becomes an internal struggle for him.
"I don't want to see my baby sick, I try to put my best face forward for her and remain positive," he said. "I have faith and we will see what happens when everyone comes out to help."
For more information, visit www.makailahfightagainstfa.org
- Contact reporter Fiona Stokes at 714-9149 or email email@example.com.