GRAND RAPIDS, Mich.-- A family learns their youngest daughter has an incurable and rare disease. After seeing the struggles her sister has gone through, her older sister is raising awareness for more research and treatments.
The disease is call Fanconi Anemia. If you've never heard of it, it's probably because there's fewer than 1000 patients being treated for it in the U.S. The inherited disease can be deadly. The disease develops most commonly in children and causes bone marrow failure, leukemia, and cancer. 13-year-old Tara Cleary was diagnosed at only 8-years-old. The now 13-year-old says besides just trying to be a teenager she has a whole other set of pressures.
Tara Cleary loves to paint, play with her Wii, and hang out with friends. Normal activities in the life of a teenager on the outside, but Tara has something else on her plate..
“It is scary because when you're 8 and you are just going in for a routine blood draw and when you come in they tell you, you have a disease. You don't really know what it is, but you're going to have to go this through a treatment for 6months, and it’s really scary,” said Tara of her Fanconi Anemia diagnosis.
The Cleary's didn’t know much about the disease when Tara was first diagnosed.
“It was scary of course. I was on Web MD. I remember in my dorm room trying to figure out what it was,” said Tara’s oldest sister, Natalie.
Fanconi Anemia is considered primarily a blood disease affecting all systems of the body-leading to cancer and bone marrow failure. When Tara was diagnosed at 8-years-old, she needed a bone marrow transplant immediately. It’s something she still remembers.
“There would be loud people outside your door all night, and nurses coming in waking you up with all the lights and machines,” she said.
The normal life span of someone with Fanconi is 30-40 years old, something that's come a long way. The Clearly's hope to help advance it further.
“I feel like she is one of my best friends I would do anything for her obviously as a sister,” said Natalie.
In May, Tara’s sister Natalie is raising awareness and funds for research in the Fifth Third River Bank run. She started a fundraising pagehere.
“I have watched her go through a lot of different struggles over the years,” said Natalie.
The funds will go to the Fanconi Anemia research fund.
“It really is about anybody who has Fanconi Anemia, but anybody who has a disease that is connected. In fact, the research will contribute to cancer treatments and cures as well. I think it’s important to know that anytime we advance medical research we are advancing research for all kinds of diseases,” said Tara’s mother, Mary Eilleen Lyon.
Even though there is no cure yet, the Cleary's are raising awareness, because gives them and other families hope.
“Families can feel really helpless and you are just swimming against the tide, and you are just trying to do the best for your child and your family,” said Lyon.
The Cleary's say the next step is making a difference in other family's lives whether it's a race, word of mouth, or a fundraiser.
“I think that's awesome to help a bunch of other people who aren't even born yet,” said Tara.
Bone marrow transplant success rates for FA patients with a matched unrelated donor have risen from 0% in 1989 to over 87% today.
To learn more about Tara and Fanconi Anemia click here.
