Fighting sickle cell with legacy of love

WESTERN BUREAU:

For the last nine years, Andrea Hall has been honouring the legacy of her daughter, former Miss Universe Jamaica Shakira Martin, who died of sickle cell complications, through the Shak’s Hope Foundation.

Hall’s mission is to assist other ‘sicklers’ and their loved ones to navigate the struggles of living with the sickle cell disease, which swiped her 30-year-old daughter from her in August 2016. She is now using the Shak’s Hope Foundation, started by Martin, to spread awareness of sickle cell.

“I don’t want anybody to go where I have walked. To lose a child at that age is something you never get over,” Hall told The Gleaner, in explaining her desire to immortalise her daughter’s memory while helping others.

According to the Ministry of Health & Wellness’ official website, sickle cell disease (SCD) is a disorder in which the majority of the oxygen-carrying red pigment (haemoglobin) in a person’s red blood cells is type S. Under some situations, these red blood cells form a unique sickle shape rather than remaining spherical. These cells degrade more quickly than normal cells, resulting in anaemia (low blood count).

Hall admits that shouldering her daughter’s legacy is difficult, but she does so with pride. She has been organising an annual Easter treat since 2017 and holds monthly virtual meetings to provide mental health assistance to sickle cell patients.

“She was very passionate about helping children and just providing a feel-good experience and lifting their spirits. She started the organisation in January 2016, and in August of that year, she lost her battle,” said Hall. “If she didn’t sit with us 10 days before her passing and explain exactly what her vision was, I don’t think I could have gone the non-profit road. We are simply continuing her legacy by doing the work that she started.”

To further the reach of Shak’s Hope Foundation, Hall has built a partnership with the Sickle Cell Unit (SCU) at the University Hospital of the West Indies (UHWI). Through the organisation’s recently held Easter treat, new collaborations were established with other local sickle cell non-profit groups.

“We had some other local sickle cell organisations that we partnered with this year – Warriors Unite and My Friend Jen – and we just came together and did it. It was amazing, tiring, but it was a good tired. We served over 200 families,” she said.

Emotional element

Meanwhile, besides the treats offered through her organisation, Hall said that she concentrates on the emotional element of persons living with sickle cell. She highlighted her conviction that “there’s a stigma attached to sickle cell,” which has prompted several courses of action.

“People have a hard time understanding things they cannot see, so when the [sicklers] go to the emergency room, they’re treated like drug seekers, and that happens all around the world. I used to tell my daughter to take ‘Thank You’ cards to the emergency room, and for every kind nurse you meet, give them a card, thanking them for caring for you. I started giving out ‘Thank You’ cards here to patients,” Hall said.

“Some of them have lost their gallbladder and spleen. A lot of them need hip replacements because, of course, where there are blood flow issues and loss of oxygen, the bone deteriorates. A lot of them can’t walk. Some need wheelchairs or walkers.”

At the same time, Hall emphasised the need to get regular health check-ups. She explained that her diagnosis of sickle cell trait occurred after a routine pregnancy check-up.

“I encourage every person that I meet to know their sickle cell status. My mother only had me; however, my mother has a very big family. I was the only person who had a child with sickle cell anaemia, and I never knew until I was pregnant. I went to do a test because, I lived in New York and was a woman of colour, and the doctor said it was a part of what is required if you’re of Hispanic, Mediterranean, or African descent,” said Hall. “I was positive, and then her dad had to be tested because of that. He was also positive, so they did genetic counselling for us to understand what we might be dealing with.”

rochelle.clayton@gleanerjm.com