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March 31, 2016 – Since their first Care Walk last year, the Michelangelo family has invested a great deal of time and heart to serving the thalassemia community. They have held several fundraisers in their hometown of Boston, including a popular meat raffle event in which donors can bid on meat baskets from the local butcher.
We are so excited to introduce the thalassemia community to this young family. Read more about the Michelangelos in the interview below. (You can donate to the Michelangelos’ Care Walk team, Team Joshie, by clicking here.)
Tell us a little bit about your family.
We live in a small town south of Boston. Kelley is a licensed child and family therapist and Ryan is a project manager. Our 4 year old son, Josh (we call him Joshie) is full of energy and has a contagious laugh and a heart made of gold. He’s just like every other toddler; he loves Mickey Mouse, trucks/cars, Legos and playing outside.
How did you hear about the Cooley’s Anemia Foundation and what made you want to be involved in the Care Walk for the first time last year?
Last year, at our son’s 3 year checkup, his pediatrician became alarmed when the routine blood work came back. After spending hours in the doctor’s office reviewing his medical history and my husband’s family history, we were sent to the hospital for further testing. He was then diagnosed with carrying the thalassemia trait. We asked a million questions and his pediatrician gave us the contact information for the Cooley’s Anemia Foundation. We began reading about the disorder and came across so many stories of families and the impact it has had on them. We were shocked and extremely grateful that our son is healthy and doesn’t need treatment.
Joshie is our daily inspiration to try and make a difference. As a parent, one of the most rewarding things is watching him love life and enjoy the beauty that the world has to offer. To us, it’s imperative to give back to the community and help others.
Why do you think it is so important to raise awareness about thalassemia?
Thalassemia is rare. We had never heard of it prior to last year and none of our friends or family had either. In those first few weeks after our son’s diagnosis, we felt like we were living in a silo and wanted to be connected to someone who knew what the disorder was to help understand it. Raising awareness and educating our communities is important to ensure people are being tested, are able to locate treatment, resources, and supports, and to assist with fundraising so a cure can be found.
Last year was your very first Care Walk. What made it special and what are you planning to do this year?
For us, the amount of support from our family and friends was overwhelming. We only had a few weeks from when we learned about the disorder and received our son’s diagnosis before coordinating the Care Walk, so to see the amount of people that came and donated in those few weeks was amazing.
This year through the help of the Foundation we have joined with more walkers, and we are having a raffle for items that members of our community have graciously donated and, of course, a delicious lunch and snacks!
What would you like the world to know about thalassemia?
With patience and persistence, a cure will be found.
If you’re not involved in a Care Walk yet, you can register yourself at http://bit.ly/carewalk2017.
written by Mary Woldegiorgis