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A sister’s healing love

A sister’s love: Aquilah Salaam (right) suffered with sickle cell but was cured after her sister, Siddeeqah Ray, donated her bone marrow

For years Siddeeqah Ray watched her sister Aquilah Salaam suffer, as she battled with sickle cell anaemia.

The 28-year-old had endured the pain brought on by the disease and related illnesses since she was two. The past five years were particularly horrible.

And then Mrs Ray learned her bone marrow could help.

Although nine months pregnant at the time, she agreed to the transplant. It was described to her as risky, but potentially life-saving.

The family learned on Christmas Eve that Miss Salaam was completely cured.

“When the doctors approached me to say I was a match it was an automatic, Yes, I will do it,” Mrs Ray said.

“Especially after seeing her go through this for the past five years. She has had sickle cell since she was born and complications since she was two, but the past few years have been extremely hard on her.

“I was there when she went up to Boston in May to have open-heart surgery.

“Before that Aquilah was going for blood exchanges every two weeks, but the doctors wanted to explore her heart and kidney functions. We went in for a regular [cardiac] echo and they found a blood clot the size of a peach in her heart.

“After she went through all of that it was automatic that I would do it. I said, ‘If this is her best chance of having a pain-free life, or even some quality of life period, then we have to try’.”

Mrs Ray had her son Zoryon in September. She went ahead with the treatment once her GP gave her the okay.

“I went up to Brigham and Women’s Hospital on November 18 and then had the bone marrow taken out on the 19th,” the 34-year-old said.

“It was extremely painful. It’s only one day in the hospital, but because they are puncturing your hip bones it was extremely painful. They punctured me 100 times, 50 on each side. But after a week or two I pretty much had my mobility back and now I’m practically fine.

“My bone marrow restored itself after six weeks. I didn’t have to take any medications for that.”

The family then waited 30 days to see if the surgery was a success.

“It was very much a blessing to be able to know it worked,” Mrs Ray said. “It was the end of a difficult chapter for her and the start of a new one in 2015.”

Miss Salaam will have to stay in Boston for the bulk of the year.

Her immune system is extremely low. She’s been confined to an apartment in order to avoid catching any colds or infections.

“I can’t be around crowds or eat certain foods,” she said. “But I’m looking forward to the next year because my recovery is going good so far and I feel it’s going to continue to go smoothly.”

She said it’s the first time in many years that she’s lived without constant pain.

Her sickle attacks came more frequently as she got older.

She was able to move to Toronto to study cosmetology, but her illness worsened when she returned home in 2005.

“In 2009 I was diagnosed with avascular necrosis, a condition in which lack of sufficient blood flow carrying oxygen causes the breakdown and death of bone and marrow tissue,” Miss Salaam explained.

It meant she had to have both hips replaced. She wasn’t yet 25.

“In early 2010, I was hospitalised in the ICU at King Edward VII Memorial Hospital for acute chest syndrome. Days later I was airlifted to John Hopkins in critical condition due to two large clots in my lungs.” Doctors deemed her unfit to work but these days her future is looking a little brighter.

“My recovery gives me a lot of hope for the future,” she said. “I have a lot of plans for myself, like going back to work and opening my own nail and hair salon one day. That’s been my dream from when I was young, but with all my complications I was told I needed to find something for work where I could sit down.

“Now that I’m cured I will be able to do things like everyone else, without being affected by sickle cell.”

She said she was extremely appreciative of her sister and the rest of her family for their support.

“If it wasn’t for her I wouldn’t be where I am today,” she said.

“I am recovering very well. I have my bad days, where I’m not feeling too good and stuff like that, but I am doing much better. The pain is gone.”

The transplant operation was covered by insurance, however there is a financial cap. The family will have to pay out of pocket for accommodation and certain medications.

Make a donation through Butterfield Bank account #20 050 060 746 750 210.

Aquilah Salaam (right) suffered with sickle cell but was cured after her sister, Siddeeqah Ray, donated her bone marrow. This photo was taken shortly before the procedure in November. (Photo supplied)
Sickle cell sufferer Aquilah Salaam

WHAT IS SICKLE-CELL ANAEMIA?

It’s a hereditary blood disorder in which the red blood cells, normally shaped like a disc, take on a sickle or crescent shape. These cells are needed to carry oxygen throughout the body. The abnormal cells are unable to move around as easily as normal cells and can block blood vessels, resulting in tissue and organ damage and episodes of severe pain.

Sickle-cell is associated with a number of acute and chronic health problems, such as severe infections, attacks of severe pain and stroke. There is an increased risk of death.

How does a bone-marrow transplant help with sickle-cell anaemia?

Known as hematopoietic stem cell transplantation (HSCT), this medical procedure is most often performed for patients with certain cancers of the blood or bone marrow, such as leukaemia.

As the survival rate of the procedure increases, it has been used for other autoimmune diseases as well.

Before treatment, the recipient’s immune system is usually destroyed with radiation or chemotherapy.

It remains a dangerous procedure with many possible complications and is reserved for patients with life-threatening diseases.