Successful treatment of CGD with bone marrow transplant – Celebrating Sophie and Hailey!
On the 21st March 2015, Kylie Smith, mum to Sophie and Hailey posted on her Facebook timeline: “Sophie has been diagnosed with Chronic Granulomatous Disorder (CGD). This is a rare inherited disorder, so Hailey is being tested on Thursday. This explains why she gets sick so often.”
Eight years later, and both girls are back home in Townsville after nearly two years in Brisbane to be close to their treating hospital, they’re back at school with their friends, they’ve taken their last medication, and are cured!
It’s easy to skip over those intervening 8 years on the page, but it was a tough time for the whole family. CGD is a disorder where white blood cells are unable to do their normal job of engulfing and absorbing pathogens. As a result, an infection that might make someone else just a bit unwell can be a life-threatening illness for someone with CGD. While CGD can be managed with careful use of medication, the only hope of a cure is a bone marrow transplant.
Which is why Sophie, Hailey and their mum and dad relocated from Townsville to Brisbane 20 months ago. Here’s their story in Kylie’s own words:
“It has been so amazing that the girls are medication free for the first time since they were two and a half years old. It will be eight years in March since they were diagnosed with Chronic Granulomatous Disease. They took their last medications back in August 2022. It has been weird adjusting to the new normal where we don’t have to worry about injections three times a week and twice daily medications. We can go away on a trip and not have to make sure we have all the medications plus a little extra as a precaution.
The girls are still not fully out of the woods. Their oncologist said something can still happen between now and their two-year bone marrow birthday, but if nothing arises [by then], it’s unlikely that it will. They will still need to see an Endocrinologist when they are about twelve years old to see if they need help going into puberty or not.
I used to worry about that more, but I have realised there is no point fretting about something we cannot change and who knows, medicine is always advancing. When they decide to have families, there might be new practices out for fertility.
We are yet to confirm whether they are ceoliac still. We have an appointment with the girls’ old Gastroenterologist soon, so he will be able to tell us hopefully.
It is great being back in Townsville. I went straight back to work. My workplace kept me employed on extended unpaid leave for the past 20 months while the girls had their BMTs and I could focus solely on them. The girls have gone back to their old school to their old friends and teachers. The School followed their journey and were excited to see them when they returned.”
We are happy that Arrow were able to help ease some of the financial burden that came with the girls receiving treatment, and we are thrilled to hear how well and happy they are!
