Volunteer Spotlight: Charisma Chulani Leads Orlando Care Walk in Honor of Her Three Children

April 11, 2018 – CAF launched our “Volunteer Spotlight” Series two years ago to highlight the stories of some of 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 we thank them for their commitment to improving the lives of individuals with thalassemia.

Charishma Chulani and her husband Harry Chulani are an inspiring couple who are both thalassemia carriers and parents to three children with thalassemia major, or Cooley’s anemia. They are hosting their second annual Care Walk as Team DNA this year in Orlando, FL on May 20 in support of individuals with thalassemia all over the country.  CAF thanks Charishma and Harry for sharing their story with the community through this interview, and for raising thalassemia awareness through their Care Walk. To join Care Walk 2018, visit bit.ly/carewalk2018.

CAF: Could you tell us a bit about yourself and your family?

We live in Orlando, Florida, and I work as a part-time photographer. I’m 37 and I met my husband when I was 12 years old as our families were close friends. Our marriage was not arranged, though. We actually rarely ever spoke until I was 17 years old. We’ve been married for 14 years now and have three amazing children together, Aryan (Ari), Dylan, and Nia.

CAF: How did you learn that you are carriers of beta thalassemia?

My in-laws actually insisted I get trait tested because they already knew that my husband was a carrier. So I had no idea until I was 22 years old that I was a carrier. We did not really know much more than the internet told us at that time, which was very little and very negative. We were married two years later and just hopeful that the odds were in our favor.

CAF: What were the biggest questions, concerns and fears you had about raising three children with thalassemia?

I think we just worry about the unknown the most. Not knowing what the iron chelation medication may be doing internally is always in the back of my head since it’s all fairly new. Also, I fear that they could get bitter that the condition is lifelong. Especially in the teenage and/or young adult years. Hospital visits are frequent and this will eventually interfere with their school, a job or social life.

CAF: What are the greatest joys of parenting three children with thalassemia?

The fact that all three have thalassemia major is disheartening, but at the same time it is really incredible as a mother to witness my children caring for each other the way they do when one of them has had a rough day. Also, as they grow they won’t have the opportunity to compare themselves to the other siblings as they all share the same condition. I mean, no matter how you raise kids, it’s a natural thing for them to wonder why one has something that the other doesn’t.  Each of my children have such a unique personality and inner strength. They are so different from one another!! My hope is that they will collectively use these differences to get through the difficult stages of their life. It makes me happy knowing that they will have each other as support always.

CAF: What made you decide to begin your own Care Walk?

Well, out of the 1500+ people in the United States with thalassemia, I have three! I’m so grateful to be able to spread awareness and raise funds for a cause that is this close to my heart.

CAF: Why do you support the work of CAF?

We have received great support from CAF over the past 9 years I love being able to give back in some way and contribute in the effort toward researching how to make the lives of our loved ones better.

CAF: Do you have any advice to new parents of children with thalassemia?

I know from experience how difficult it is to digest the news that your child has any sort of health condition. Nothing truly alleviates this initial shock, regardless of how many children with thalassemia you have.  Just know that thanks to research and modern medicine, thalassemia is manageable. Life is different but still beautiful and normal. Raise your children to see the beauty in the life they lead and see how fortunate they are always. Sometimes, we take it harder than our children and we just need to remember our kids are watching and learning from us! We have to keep a positive outlook and remind them that they are strong and capable of anything.

CAF: What is your greatest hope for your children and other children with this disorder?

Of course an easy cure would be great, but I honestly don’t focus my thoughts on this. I just hope that they always see the positive and understand that in life, this is just a bump in the road. It doesn’t define them and won’t hold them back from their dreams as long as they stay positive and mentally strong.

 


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