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Chantal's experience

 

What's it like to live with a rare blood disease? Four stories about being ill, about fighting, caring, hoping and getting better. About how something so serious can also lead to something beautiful.

 

She wears a striking brooch, a blood-red crescent moon. It's a symbol of sickle cell disease. Chantal Cooper received it from Sophia Children's Hospital when she handed over her book 'Party Time!' to a girl with the sickle cell condition. As with Emma Children's Hospital, everyone at Sophia is highly enthusiastic about Chantal's book. The main character, Jaleesa, also has the disease. But, despite this, she sees life as one big party.


Chantal also has this hereditary, chronic blood condition. When she was six, she swam in a cold river and by nightfall was very sick. Fortunately, a pediatrician recognized this as a sickle cell crisis. "In sickle cell disease, the red blood cells look like a crescent moon. Because of their irregular shape, they clump together; when you get an attack, the clots block blood vessels. Your organs or arms and legs don't get any oxygen and can die," explains Chantal.

 

“Every child can feel like a superhero in his or her own way.”

 

Triggers for an attack include temperature differences, extreme stress, infections or bad food. There is no real treatment for the disease and current procedures are mainly aimed at preventing the attacks.

Chantal experienced several sickle cell crises when she was young, but, throughout childhood, she did everything a normal child could do: "I swam, climbed trees and helped with household chores, just like my sister. My mother didn't treat me like a delicate doll and that gave me a positive self-image."

 

Chantal is still grateful to her mother for this. "It was only after finishing my studies in English, when I had been working for a few years, that she told me how worried she'd been. But she never let that show at the time. That was amazing and it was very good for me!"

 

She used her story to write ‘Party Time’, a book for children with sickle cell disease and their families. Chantal says, “With my book, I want to inspire them to enjoy life just like Jaleesa does, even though she has sickle cell disease. When a child tells the story to other children, it’s easy for them to understand, but it’s also fun to read!”

 

Her message to parents is that their child has to discover his or her limits: “Hearing ‘don’t do that, it will make you sick’ is not good for your self-esteem. The book also helps people talk about the disease.”

 

For a long time, Chantal was unable to work as her sickle cell disease caused complications during treatment for breast cancer. Her hearing was damaged and she had to quit her job as an English teacher. She also began to suffer more from the consequences of sickle cell disease. But none of this stopped her. In fact, Chantal has transformed the negative aspect of the condition into something positive.

 

Chantal is now a legal and sworn translator and together with Carolyne, Jordi’s mother, she founded the Projects for Superkids Foundation. She adds, “Our aim with Projects for Superkids is to motivate children to focus on the beautiful things in life. The books help them to understand and process what is going on in their lives. We want to donate the books to them and we need sponsorship for that.”

 

She aims to let children know they aren’t alone and that everyone has something to offer and finishes by saying, “We want to send out that message to all children with a disease or condition: to let them focus on positive things. Maybe you can’t play basketball or run, but you can play music or write beautiful poems. Every child can feel like a superhero in his or her own way.”

 

Chantal has found a way to deal with sickle cell disease. There are many more people who don't have regular treatment options for their disease or condition. myTomorrows provides insight into medicines currently in development across the world. Contact our medical team if you have any questions about treatments being developed either in your own country or abroad.

myTomorrows helps patients who have exhausted their regular treatment options. There may be a suitable treatment option that is in development. Read more and make an appointment with our medical team.

 

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Dit verhaal uit meerdere invalshoeken bekijken?
Lees de rest van reportages uit deze serie hieronder.

Jordi

“I'd rather do fun things.”

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Carolyne

“I sometimes tell them they shouldn't fight, as they literally have the same cells.”

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Sonja & Heike

“Unpleasant things only happen in the treatment room. This way, the rest of the pediatric ward feels safe.”

Read more