By Malini Devi Chandra Mohan
My sons, Suria Prabhu and Prasath Raj, will always be part of me. I lost both of them to Fanconi anemia (FA), and that is a pain I will carry with me forever. But I don’t want their story to end with their loss.
By sharing our journey, I hope to create more awareness about FA in Malaysia and help other families find information and support earlier than I did.
Learning about FA
Suria Prabhu was 3 years old when he was diagnosed with FA. Prasath Raj was just 6 months old.
As a mother living in Malaysia, I honestly had no idea about Fanconi anemia at the beginning. I thought my children’s health differences were related to the fact that I had married my cousin and that they had some kind of genetic disorder.
When we finally found out it was FA, it was a huge shock. It took me around six months to accept the reality that my children might not reach adulthood. It was a very difficult and painful journey as a mother.
I didn’t fully understand FA when we first received the diagnosis, so I learned along the way. I had very little information and felt very alone.
Living with worry, giving with love
FA was a big part of our daily life. I was always worried about my children’s health, blood counts, hospital visits, transfusions and infections. There were many difficult days, and I was constantly trying to keep them safe and strong.
It was emotionally very difficult, but I always tried to be there for my children and give them as normal and happy a life as possible.
Cooking and baking have always been ways for me to show my love and bring my family together. My sons used to tell everyone, “My mom is the best cook!” That is one of the little memories I will always treasure.
I also enjoy my work, keeping myself busy and exploring new places through traveling. After everything I have been through, I have learned to appreciate the simple things in life and cherish every moment.
Learning to let go of guilt
One of the hardest parts of my FA journey was the guilt I carried as a mother. My children sometimes blamed me for marrying my cousin, and I also blamed myself. I often wondered, “If I had not married my cousin, could I have prevented my children from having FA?”
I carried that guilt for many years. But I eventually understood that I did not know about FA or how genetic conditions could affect my children. I was making decisions with the knowledge I had at that time.
That was very painful for me to accept, but I learned that I cannot change the past. What I can do is share my experience and raise awareness, especially in Malaysia, so other families can have better information and support earlier than I did.
Hope for other families
I wish more people understood that FA is much more than just a blood disorder. It affects the whole family emotionally and physically. As a mother, there is always fear and worry about what the future will bring.
FA families need understanding, support and hope. Sometimes, just having someone listen can mean so much.
What I hope for most is greater awareness, earlier diagnosis, access to treatment and support for families affected by FA in Malaysia. I hope no other mother has to go through what I went through, feeling confused, unprepared and alone while watching her children struggle with FA.
Most of all, I hope children with FA will have the chance to live longer, healthier and happier lives, and that one day there will be a cure.
To every donor who makes research possible, thank you from the bottom of my heart. I know how frightening and lonely this journey can be, especially when you don’t have enough information or support. Your donations help make research, better treatments and the possibility of a cure possible.
I may not be able to change what happened to my children, but knowing that research is continuing gives me hope that other children with FA, especially in Malaysia, may have a different and better future.
Carrying their memories forward
I am divorced and now living on my own. I honestly don’t know what the future will bring, but I am learning to take one day at a time.
I will miss my children every day, and I know I will carry their memories in my heart until my last breath.
My sons will always be part of me, and I hope their journey can bring hope to other FA families.
