Sickle cell warriors are survivors
Published:Wednesday | October 1, 2025 | 12:06 AMKeisha Hill/Senior Gleaner Writer
THREE YEARS ago, Latoya Minott Smikle’s world plunged into darkness. After five-and-a-half years of fighting courageously, her son Aiden-Jon Hall passed away due to complications of the deadly Sickle Cell Disease in 2022.
From her painful loss, she has transformed her healing into establishing the Aiden-Jon Amir Hall Foundation, which is seeking to raise $1 million this year to provide financial support to six individuals with sickle cell disease.
The foundation, launched under the patronage of the Custos Rotulorum of the parish of Manchester, Lieutenant Colonel Garfield Green, is also looking to raise awareness about the disease.
Sickle cell disease is an inherited blood disorder that arose thousands of years ago in Africa to provide a protective advantage against malaria. In the early 1900s, western medicine identified the characteristic sickled red blood cells and in 1949, scientists discovered the underlying cause: a mutation in the haemoglobin protein.
The disease’s connection to malaria is why it disproportionately affects populations with African ancestry, and in the 1960s and 1970s, it became a significant focus of the civil rights movement due to its widespread impact on communities of colour.
During her fourth pregnancy, Minott Smikle, now mother of five, learnt that her four-week-old baby had sickle cell disease. At the time, she also found out that she, her partner, and their three other children were carriers of the sickle cell trait. Subsequent checks would later reveal that it was likely her mother who had the sickle cell trait.
“The Aiden-Jon Amir Hall Foundation was founded in August 2024 as a personal and spiritual action, as a response to the struggles of persons in central Jamaica, especially small children who are ailing with sickle cell disease,” Minott Smikle said.
One of our objectives is to provide, not only medical and support-based activities to sickle cell warriors, but to provide a scholarship for at least one child living with the disease who is proven to be resilient in his or her studies despite the limitations imposed upon him/her by the disease,” she added.
Minott Smikle said they envision a world where every child living with sickle cell disease has access to the care, support and opportunities they deserve; free from stigma, isolation, need and inequality.
“Through increased public awareness, early intervention and community-driven advocacy, we will strive to create a future where challenges of the disease are met with compassion, understanding and lasting solutions,” Minott Smikle said.
Aiden-Jon she said, was a happy, loving and playful boy who loved helping others even at his age. “He was a real charmer with the ladies and they liked to give him flowers. He was with us for a short while, but was like an angel, touching the lives of so many adults and children alike. He was five and a half, when he left us. His memory remains as a key motivation for the work at hand,” Minott Smikle said.
Dr Martina Clarke-Robe, public health specialist at the Trelawny Health Department who was a presenter at the launch held recently, said one in 150 Jamaicans have sickle cell, while one in 10 are living with the trait. Many of those who have the trait, she said, have never been sick, while persons living with sickle cell can be described as sickle cell warriors.
“A person with sickle cell disease experiences chronic pain from sickle cell crises, increased susceptibility to infections, and other complications like anaemia, stroke, and organ damage,” Dr Clarke-Robe said.
“A hallmark of the condition is painful episodes, known as sickle cell crises, caused by blocked blood flow through blood vessels. An abnormally shaped red blood cell shortage can lead to more serious infections, requiring preventative antibiotics and vaccinations. Shortages of healthy red blood cells result in anaemia, causing extreme tiredness. Potential long-term issues include stroke, eye problems, organ damage, and painful swelling of the hands and feet,” she added.
Minott Smikle said other objectives include promoting sickle cell disease testing, spreading the word about SCD online; in schools; in communities; in churches and GOs and NGOs through workshops; give SCD warriors a voice to share how they feel with the formation of support group and a community where they can get not just help but counselling and building and engaging communities.
Their vision also includes partnering with entities such as the Sickle Cell Unit to share best practices and research information.
Minott Smikle said it is also their intention to lobby the Ministry of Labour Welfare and Social Security to include sickle cell disease on the list of disabilities. This she said can be supported by the fact that SCD patients suffer long-term medical impacts that often time render them incapable of working or to be out of work and school for extended periods of time.
The foundation’s first major event and its main fundraiser will be held on October 25 at the Church Teachers’ College poolside in Manchester; while the final activity for the year will be a warm clothes treat for sickle cell warriors. Blankets, sweaters, hot/water bottles, socks, etc, will be provided to help with the upcoming cold season.
To join the efforts to make the lives of someone living with sickle cell disease better and more meaningful, contact: aidenjonamirhallfoundation@gmail.com