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September 21, 2016 – In honor of World Gratitude Day, CAF is pleased to launch our “Volunteer Spotlight” series to highlight the stories of some the many selfless volunteers who play a major role in making our work possible. We are truly grateful for all of the love and heart-felt effort each of our volunteers puts into organizing awareness events, blood drives, and fundraisers, and thank them for their consistent commitment to improving the lives of individuals with thalassemia.
Maria Saradpon and Erica Martinez may be new volunteers, but they have already made a big impact on thalassemia awareness by organizing their first event in San Diego earlier this year. CAF thanks Maria and Erica for allowing us to share their story, which can also be found on their advocacy website, thalpalsandiego.com.
We met at Rady Children’s Hospital with the help of our former nurse practitioner, Roberta. I was a mess. My husband and I just found out a couple months prior that our 5 month old baby girl had a serious chronic illness and would need blood transfusions every 3 weeks for life. She would have surgery the following week to insert a port in her chest because her last blood transfusion took 10 pokes to finally start. A lot for new parents to accept to say the least.
Anyway, bless this nurse’s heart- she knew I needed someone to tell me it would all be alright; that I would find comfort in knowing I wasn’t alone. She gave me Erica’s phone number and encouraged me to call.
Erica had been asking to be connected with other thal parents for years. It never happened, so she eventually stopped asking. Then one day Roberta told her that there was a mom she wanted her to meet. She explained that this family just started treatment and seemed like they could benefit from having another family to connect with. Erica gladly gave permission to release her contact information, and waited patiently for a call.
I didn’t call. I don’t know why, I guess I was nervous? “Hi! My daughter has thalassemia too. Can we be friends?” Seemed awkward to me any which way I were to say it. Besides that, we had infant surgery to mentally prepare for and a regular blood transfusion schedule to adjust to. I put it off, days turned into weeks, and weeks turned into months. Roberta moved away. I ended up losing the paper I’d doodled her number down on, and thought that was the end of that.
Four months later at one of Kamila’s transfusion days, our case manager Beth came up to me and said that Erica was still very interested in meeting if I was up for it. I apologized for never calling and admitted to losing the number. Beth must have already known because she handed me a sticky note on which she’d already written down Erica’s contact information.
This time I did call, and we agreed to meet at the hospital during Ella’s next transfusion. I was so happy to see Ella that I almost cried. She was a beautiful, smart, cheerful little girl. She looked like any “normal” happy kid which made me hopeful for the future of my baby girl. I had so many questions for Ella. I was curious to see if she could feel her port being accessed, what it felt like before and after a blood transfusion, how easy or difficult it was for her to chelate, and the list goes on.
Erica told me about the volunteer work they do with the San Diego Blood Bank thanking donors, and about the Cooley’s Anemia Foundation. Everything she shared left me feeling uplifted and inspired. She was so sweet, and told me several times not to hesitate to call if I ever had any questions or just needed someone to talk to. Well, I took her up on it. I called or text whenever a question came up.
A few months later, my husband and I decided to host a blood drive in honor of Kamila’s 1st birthday. Again, I can’t tell you exactly why- but it took me almost a year after Kamila was born for me to officially “come out” and tell all my friends and family about her condition. I’d told my closest friends and most of my family, but something held me back from full disclosure. I was hosting a blood drive and I wanted it to be successful, so I took that opportunity to tell everyone I knew about her blood disorder, and encouraged all to attend and give blood. Coming out and sharing Kamila’s story filled a hole in my heart and made me feel complete. From then on, I felt a strong calling to raise awareness about thalassemia and to advocate for the importance of blood donations
Well, to make a long story longer… I found out that Erica felt that same calling. We partnered up and the following year, hosted a blood drive and fundraiser in honor of World Thalassemia Day 2016. We collected over 100 units of blood for the San Diego Blood Bank and over $5,000 for the Cooley’s Anemia Foundation.
Which brings us to today! Our goal now is to create a support group for local thalassemia patients and families. In all honesty, meeting Erica changed my life. Although I’m pretty sure that Malcolm X wasn’t referencing thalassemia with his quote, “When ‘i’ is replaced by ‘we’ even illness becomes wellness,” I can’t think of a truer message when it comes to thriving with thalassemia. This illness CAN become wellness with a strong support system. The inspiration I gained from Erica completely turned around my view of thalassemia for the better, and we want to share this outlook with as many families as we can. We hope to learn from one another and work together to raise awareness within the community. With thalpalsandiego.com, we believe we can.
CAF is happy to help keep members of the thalassemia community in touch. Follow us on Facebook, Twitter and Instagram, and if you are not on our email list, please email us (firstname.lastname@example.org) and let us know.