Safeguarded by science: How research made treatment safer for Wemi

6 May 2024 | Expected time to read: 4 minutes

When her then six-year-old daughter, Wemi, was diagnosed with sickle cell disease, Titilade struggled to accept the diagnosis.  

"Where I grew up in Nigeria, there was no cure for sickle cell. We knew a little bit about sickle cell anaemia, and we've seen children in the past, how they suffered, and we know it's very difficult for the family as well. 

“There was so much going on, and at first we were in denial because ... it was very shocking for us.” 

Wemi was referred to The Children’s Hospital at Westmead for treatment, under the care of the haematology team. 

“When we came to the hospital, we were given education and were supported,” Titilade remembers.  

“Her main symptom was acute pain. And it was the pain that would radiate to all parts of her body. It was indescribable to see her in pain. I remember when they asked Wemi to rate her pain out of 10, she would scream and tell them more than 10.”  

For the next five years, Wemi's journey was filled with hospital visits, multiple medications daily and regular blood transfusions. At one point, Wemi was having a blood transfusion every three weeks.  

Despite spending so much time in hospital, Wemi was growing into a bright, energetic girl with a love for reading, writing and public speaking – one who readily made friends with everyone.

Wemi stands in the halls of the hospital. She has her hands up in the air. She is smiling beneath a surgical mask. Wemi is wearing a yellow, red and blue striped dress and black sneakers. A statue of Buzz Lightyear from Toy Story is in the background, along with rows of red chairs and artworks in the windows.

The next step, a bone marrow transplant 

Sadly, it was becoming obvious that symptom management of the disease was no longer a sufficient treatment for Wemi, and she and her family were given the option of a bone marrow transplant in an effort to completely replace her blood cells and immune system.  

Bone marrow is where our blood cells are created, and in sickle cell anaemia, the red blood cells, rather than taking a rounded shape, take the shape of a sickle. Their unusual shape means red blood cells can join and become clots, leading to a variety of poor side effects including severe pain, multi-organ failure and strokes.  

A bone marrow transplant involves removing a patient's bone marrow completely and giving them new marrow from a donor, in a complete reset of their blood-cell creation factory and immune system. While it is a guaranteed cure if the procedure is successful, the procedure is also risky and complex.  

Wemi lays in a hospital bed. She appears to be sleeping, with a white sheet and aqua coloured blanket covering her. She has a plush doll on the bed next to her. There are hospital machines surrounding Wemi.

A procedure informed by research  

While the success of a bone marrow transplant is not guaranteed, generous funding by Sydney Children's Hospitals Foundation (SCHF) donors is helping fund research so that doctors like Dr Keogh, paediatric oncologist at The Children's Hospital at Westmead can make this procedure a lot less risky.  

The research, into a type of pharmacology called pharmacokinetics, studies how much of a type of medicine each patient needs to have the best therapeutic effects with minimal side-effects. This research informed Wemi’s bone marrow transplant.   

The first step in an admission for a transplant is usually giving high dose chemotherapy,” Dr Keogh explains.  

“ We know that if you give a single dose of chemotherapy to two children who are the same size, that you'll get a 20 percent variability in the way they metabolise that chemotherapy drug. 

“If we give too much chemotherapy, we can make the patient extremely unwell from the toxicity. If the patient metabolises the drug fast and gets a low exposure, what can happen is the patient’s bone marrow isn't completely removed and their residual immune system can actually reject the graft.” 

Wemi is in a hospital bed propped up by a pillow. She has lost her hair due to treatment. She is smiling with her tongue sticking out and is throwing up peace signs with both of her hands.

A delicate balance for a great result  

The delicate balance of pharmacokinetics can make all the difference in a patient’s outcome, and patients like Wemi show the overwhelming benefits of Dr Keogh's work. After less than three months in hospital under protective isolation, Wemi was declared cured of her sickle cell anaemia, discharged from hospital and has not looked back. 

Now, Wemi is vice-president of her school, is excited about letting people in her church know about her role as an ambassador for Sydney Sick Kids Appeal and is looking forward to finishing primary school this year. 

Wemi and her mum are sitting close together. Wemi's mum is kissing Wemi on her left cheek while Wemi smiles. Wemi is wearing a white floral dress and a black leather jacket. Wemi's mum wears a multi-coloured print top and light camel coloured pants.

Wemi reflected on the significance of donors and how they have shaped her journey: 

“There are so many kids inside this hospital who are just like me. I want so many people inside this place to be like me and go out and finally be a normal kid again. Donating could help a kid go home and it would make them happy. I was so happy when I realised that I was cured, and it would be amazing if you could donate and save someone's life.”

Support Sydney Sick Kids Appeal by visiting www.schf.org.au or call 1800 770 122.

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