SCD Education Is A Must For All, by Adobie Mcallister

By Adobie Mcallister, Vancouver, British Columbia

 

My name is Adobie Mcallister, I am the mother of a Sickle Cell Warrior.

In 2004, I had my first child, my miracle baby girl. She was born premature at 26 weeks and spent two months in an incubator. She was so tiny, we could not find clothes or a diaper that fits for her in Caracas (Venezuela) where she was born. She was so frail and fragile. We named her Odobie. Her father and I were so happy to welcome our first child. We were starting our life. As she starts putting on weight and growing, we felt relieved and happy.

A few months later, we moved to Vancouver, Canada. The day we arrived on November 26th 2004, we were in the hospital. Odobie was sick with swollen arm, legs and face. The next day, on November 27th, 2004 at British Columbia Children’s Hospital, we found out that she has sickle cell disease, SS. Her father and I were in shock. I did not know anything about the disease. Her first crisis was scary and I realized her life was going to be hard with the pain crisis. As a mom, I was so sad. We want our children to be healthy and live a good life. Here I am thinking my little princess was going to live a life punctuated with pain and hospital stays.

In a way, I felt relieved that we were in Canada because I wondered what would have happened if we were still in Venezuela? There was no newborn screening and we did not even know she had sickle cell disease. The first hardship we faced with the disease was when she had her first surgery.  At this point she went through three surgeries (for her eyes, her back and her tonsils). She has been in the ICU three times and it was very scary.

But she is fighter. She is resilient and goes through each crisis with courage and a strong determination to recover. A true Sickle Cell Warrior!

As a mom, I knew I had to educate myself in order to help my daughter.  In 2012, her doctor, John Wu sponsored me to the SCDAC’s first Sickle Cell Disease conference in Montreal, Quebec. It was at that conference that I came up with the idea to form an association with two wonderful ladies, who are dealing with this condition themselves. We are now the co-founders of the Sickle Cell Association of British Columbia.

 


 

Here is what I know for sure. Educating myself helped me to better care for my daughter. I understand the disease and I am aware of the risks as well as the solutions available. Acquiring this knowledge has contributed a lot in the way I care for her, which has improved her quality of life.  So I encourage all patient, parents, partners, spouses, siblings and friends to get educated about Sickle cell disease.

 

 

Mcallister is  co-founder, Cell Association of British Columbia, Canada