Community News

A Ninja from the Desert

By: Assila Al Marshoudi | Oct 27th, 2020

Omar Omar

Until September 2017, we were a happy family of six. We lived life to its maximum and had lots of hope for the future. As a believer in God, I knew that life cannot always be as perfect as it looks, and for certain we would have to overcome some emotional hurdles along its journey. Well, our lovely happy little family tripped into a very heavy hurdle that involved the health of our beloved little ninja, Omar.

It started with a high fever, then went to getting checked for leukemia and aplastic anemia. From there forward Omar went through many tests until one geneticist noticed Omar’s abnormal left thumb and connected it to his abnormal kidneys. That led her to the diagnosis of Fanconi anemia (FA). Omar was then four years old.

We were alone in Oman with no other FA families that we knew. I was searching online and discovered the Fanconi Anemia Research Fund (FARF). The information I read about FA gave me horrific nightmares and made me sick for months. Despite my fear and hesitation, I decided to register Omar with FARF. I knew that getting information from the right sources was the only way to be able to advocate for my son and to make sure that he is getting the best care possible. We are very grateful for all the help we received from this organization. We got connected to many FA specialists around the globe and with FA families, which meant that I got answers to many of my questions. While I was busy researching FA, my little ninja was getting blood transfusions regularly; his bone marrow was shutting down and a transplant was vital.

In 2018, we managed to attend the German Fanconi Family Meeting. It was nice to meet FAmilies and find answers to many of our questions. In Germany, it was confirmed that Omar needed a bone marrow transplant as soon as possible.

My little ninja received his new cells from his donor sister on February 14, 2019, in Oman. We started a new phase of uncertainty and worry over him, and God had other surprises waiting for us which we could never imagine! As Omar reached 259 days after transplant, I was diagnosed with stage 2 triple negative breast cancer. A mother’s worst nightmare had just turned into reality, and then this. We as a family were in total shock to receive such a diagnosis while also battling FA.

We took a deep breath and decided that my treatment would not defeat our fighting souls. We were determined as a family to fight anything that came our way. My treatment started right after my diagnosis. Omar did not know I had cancer, though he did ask about my bald head. I told him mummy needed a new makeover and new lovely hair to grow as beautiful as his had following transplant. Some days we would go together to our treatments, me for my chemo and him for his pentamidine infusions.

What I felt as a mother and a caregiver was stronger than any cancer. I was tougher than any chemo and my strength came from a little boy who taught me that FA, cancer, bone marrow transplant, etc., is not the end of the world. Life continues and we need to make the best out of it.

Omar and Family Assila (second from left) and Omar (center) with their family

Omar has grown so much in these past three incredible years! He has grown not only physically but emotionally and mentally. He is now seven years old. He loves playing with ninja turtles and wishes to become a police officer when he grows older. He has so much passion for life and appreciates the simplicity of everything in it. He has shown us how much a little spirit can blossom and how much a child can fight just for the sake of having a normal childhood. From him, we have learned how to become courageous and to be thankful for all the blessings that we have. I learned from Omar how to fight my cancer and how to stay strong through my darkest days. We are blessed with our little FA ninja who is keeping us undefeatable no matter what path God has hidden for us.

Omar now has many Omani FA friends who are fighting next to him at all times. I managed to create an Omani support group and include as much Omani FAmilies as I can. It hasn’t been easy but surely worth the effort. We take care of each other and meet during our hospital visits. We now feel that we belong to a safe place where we talk, cry, laugh and cherish all the moments together because we are FAmily.