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January, 2012 – It’s always difficult being a first-time parent – but when your baby is diagnosed with a blood disorder like thalassemia, life is immediately even harder. That’s what happened when Teresa and Joe Turchi’s four-and-a-half month old daughter Gabriella was diagnosed with thalassemia at the Children’s Hospital of Philadelphia.
“We were devastated and in denial,” Teresa said. “We couldn’t believe that this was happening.”
In that devastating moment, when Teresa Turchi was dealing with so many conflicting emotions, hospital staff told her about the Cooley’s Anemia Foundation (CAF). Overwhelmed by the diagnosis and what it meant for her young daughter, Teresa gratefully accepted the offer of helpful information.
“After a few days of letting this new chapter of our lives sink in, we called CAF,” Teresa explained. “They told us that we’re not alone. They let us know that everyone there, along with the other families that are fighting thalassemia, are all in this together. They are up to date on everything and willing to share that information to anyone who asks; knowing the options, advances and possible future treatments is terrific.”
That first call was over two years ago – Gabriella celebrated her second birthday last August. Even though she has to go for blood transfusions every three weeks and remains on a strict regimen of oral chelation medication, she’s a happy, healthy and playful little girl who loves Disney princesses, visits to the beach and reading books with her family – including her 15-year-old half-sister Alex and one-year-old brother Giuseppe.
“Gabriella gets treated just like our other kids. We don’t want her growing up and thinking that she is ‘sick’,” Teresa said. “Thalassemia will not take over our lives; it’s just a small part of it. We do however, make sure she eats well and gets enough sleep.”
The Turchi family has been through a lot together since the diagnosis, and CAF continues to play an almost-daily role in their lives – especially since late last summer, when Teresa began working as CAF’s part-time volunteer coordinator.
“It gives my heart comfort to see how great other patients are doing.”
“My job is to reach out to families to enlist volunteer support for events, fundraisers, meetings and various other activities. I’m so glad to be a part of this wonderful organization, especially for my daughter’s sake,” Teresa explained. “It gives my heart comfort when I talk to other patients and parents and see how great they’re doing. That gives me hope for the future of my little girl! I will do anything and everything I can to help her, along with all the other patients that suffer from thalassemia, by spreading awareness and educating as many people as possible.”
One particularly important moment in Teresa’s efforts was when she testified before U.S. government officials to help win approval for Ferriprox, a new medication to help remove excess iron from thalassemia patients’ bodies. Iron overload is a harmful and potentially fatal complication for those who undergo frequent blood transfusions.
“What a huge accomplishment it was to cry my heart out in front of the U.S. Food and Drug Administration (FDA), along with a few other families, in the hope of getting this drug approved,” Teresa said. Her testimony and years of CAF advocacy efforts led to the FDA’s approval of Ferriprox in October 2011, which makes life a little better for patients like Gabriella and their families.
In the two years since Gabriella was diagnosed and Teresa’s life changed forever, their family has learned that, indeed, they are all in it together. The Turchi family has done a lot to help CAF raise money and get the message out, and CAF has helped the family through some of their hardest, most uncertain times.
“I want to let everyone know that, even though the illness is not curable, it is treatable,” Teresa explained. “I want to encourage parents that it’s not the end of the world if you have a child with thalassemia. Your child will still have a wonderful life and future if they get the proper care – and the future is getting brighter by the day.”
“Your child will have a wonderful life and future.”
Thatcher Hullerman Cook