Monday, May 7, 2018

Standing Up For The Fallen


Yet another international thal day meets us with the theme: 'Thalassaemia past, present and future: Country practices, progress and growing recognition of patients' by popular vote among our thalassaemia communities around the globe. This theme was in hope to reflect and appreciate the progress among our health services to give a new meaning to life. This year’s thalassaemia day how ever comes with a feeling that has fallen heavy in my heart. 

As we grow older, we are only a few in number. I wonder what hope can this country give to the young ones who are born to live this struggle? What hope is there that in the future no child will suffer our pain? What standard of care will ensure to improve our quality of life? When are you all going to realize, the inability to produce blood is not a disability, however we are desperately in need of stability? When will the world accept us as warriors and encourage us with equal opportunities to learn, work, and build families? Do you really think, the services such as transfusion and a free medication is our gateway to live and fulfill our dreams? How about recognising the need for psychosocial support? How about addressing the need to educate societies, families, and patients on the importance of keeping adherence to our treatment? How about simply not bullying us for the way we look? 

Each year, I only hope that everyone recognises the need for a little progress every day. But, for the past couple of years, thalassaemia day greet us with pain. The list of dear lives that we have lost keep on growing. Beautiful moments that had made us stronger are only memories when the warriors who fight for our past, present, and future loses their battle.  My friends, even though they are no longer with us, I can still hear their voice, fighting and standing up for our treatment practices, progress, and empowerment, for our quality of life... and yet only little has changed.

Even more so, this year has been a tough one. Even though we are missing good old friends each year, I was never prepared to lose my beloved soul sister Niuma. She is a role model and a true inspiration. She fulfilled her dreams and gave all of us a precious gift. A little boy who will be the touchstone of her existence, a light of hope for all of us living. I want to keep her legend alive for he needs to know the story of his brave mom, who changed our lives and that she loved him with all her heart and life even way before she knew he was even a possibility. 

I am proud of who she has become and what she has accomplished. My love and respect for her will never be forgotten. She taught me to be calm, to be persistent, to keep on going when the wind seems to be against. She reminds me every time to set my sail and be the storm. I will miss her journey, her guidance, her love, and her patience. I miss her so much. 

There are no words that can express this feeling when you survive so many losses. Everyone is so quick to say how strong and tough we are, but honestly, we do not have a choice. And this is not a choice we would wish for anyone. 

Today, I want to celebrate International Thalassaemia Day, by cherishing the memory of those fallen. The only way I know how to grieve the loss of warriors is to raise voice for our future. Speak up for prevention of new births to our thalassaemia and haemoglobinopathy registry. Educate to prevent iron overload and its complications. Empower our community to prevent negligence and lack of awareness on our treatment and management. Encourage others like me to choose to live a better quality of life.

May Allah bless the departed souls, grant them Paradise, and give strength and courage to live and perceive life the way we all dream to accomplish. Ameen!

Standing Up For The Fallen

Yet another international thal day meets us with the theme: 'Thalassaemia past, present and future: Country practices, progress and g...