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.
Rósaurus is a cute dinosaur who has many exciting adventures. They're not always fun, though. For instance, Rósaurus discovers that it's very scary to have an injection. Fortunately, the nurse first explains what is going to happen. And before giving the injection, she applies anesthetic ointment so that it doesn't hurt as much.
This is a scene from one of the picture books Carolyne made for her sons, Jordi and Roan. They were still very young when they received treatment for beta thalassemia major, a rare hereditary blood disorder. "I wanted to comfort them and explain what was happening with my drawings," says Carolyne. Thankfully, that period is now behind them. Jordi and Roan, who are now 13 and 9, have been cured. They both received a stem cell transplant, with their two other brothers acting as donors.
Carolyne had never heard of thalassemia when Jordi was diagnosed with the condition. At the time, she was expecting Roan, her third child. She explains, "The doctor told me what was wrong with Jordi. I'll never forget his face when he realized I was pregnant. The medical staff knew that my next child could have the genetic disease as well." After Roan was born, they found out that unfortunately this was indeed the case.
However, Carolyne and her husband made the best of things, no matter how difficult the circumstances were. They didn't want their children to feel like patients or victims. Carolyne says, "I tried to take care of them as best I could, to remain cheerful and to do fun things with them."
But it was not always easy because, as parents, they encountered certain problems or a lack of understanding when caring for their children. For example, it was difficult to give Jordi an injection and not every hospital handled that well. "It was only after they tried unsuccessfully to administer an injection more than 10 times on the same day that the staff then did the procedure under general anesthesia," explains Carolyne. "Afterwards, at home, Jordi would have a relapse and suffer a lot. But the injection can also be done under anesthesia with nitrous oxide, as is the case at Flevo Hospital." Also, she and her husband were not allowed to sleep in the hospital when Jordi had to be in isolation before the transplant. Carolyne notes, "We really fought to change that and have succeeded."
However, they had to go through all of it again with Roan. "But that was a lot easier. Compared to Jordi, he sailed through it," says Carolyne. Although Jordi and Roan's disease was hard for the other two children as well, they have come through it all and are now stronger as a family. "We have a close relationship, although the boys will occasionally fight - just like other children," she says with a smile. "I sometimes tell them they shouldn't fight, as they literally have the same cells."
Humor is very important in the family. Carolyne continues, "It's a difficult process that never really ends, but we've managed to get through it with the help of my family, perseverance and a good dose of humor. We have a lot of crazy fun together and sometimes we're all rolling on the floor laughing. That has saved us."
Today, Carolyne is still committed to supporting sick children: "I want our experiences to help other children and their families." It's why she and Chantal Cooper founded the Projects for Superkids Foundation. Chantal has a blood disease herself and makes picture books about it: "We want to distribute our books for free and give presentations at schools to raise awareness with other children and with teachers about kids who are ill." It can hopefully make the lives of sick children that little bit easier and more fun.
Jordi and his brothers are also involved. By drawing on and sharing their experiences, they can have a positive impact on others. They help other children as well as themselves in processing what happened to them.
Jordi and Roan are now both cured. However, there are people who don’t have regular treatment options for their disease or condition. myTomorrows provides insight into medicines in development across the world. Contact our medical team if you have any questions about treatments in development 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.