Sophia's Story

In 2019 our lives changed forever my daughter Sophia was 9 years old and had been in poor health for about 12 months previously.
I was struggling to get drs to see that the diagnosis of ITP, she had received the year earlier didn’t fit the picture of her increasing number of ailments.
Low grade infections, skin problems, reactions to sunlight poor appetite and a decreasing ability to engage in school.

Sophia was finally diagnosed with Acute myeloid leukaemia in the July of that year.
Her bloods began to change dramatically after many months of only her platelets being effected and they finally agreed to a bone marrow aspiration.

Devastation doesn’t come close to the feeling you have when they tell you.
I wasn’t even told face to face but over the phone. Standing alone in my kitchen they said take her to your local hospital they are waiting for you. I could barely breathe let alone drive.

It feels like a blur now pock marked with horrific flash backs of the most difficult moments.
Three rounds of intensive chemotherapy and six months at the marsden hospital.
She was given the all clear that December. It was a miracle moment and we tried to rebuild our lives.

The pandemic hit us in the March 2020 and sophia was considered highly vulnerable, the next year was spent mostly in isolation from all our support and even hospital consultations were held over the phone.
Despite this she continued to get better returning to school and me to work as a nurse.

In 2022 those words an oncology parent never wants to hear “it’s come back”
Sophia had relapsed but this time it was myeloid Dysplasia, which may in time turn into AML. Our world of hospital visits treatment and fear began again. We were heart broken but determined to get through.

It was decided a bone marrow transplant was the only way forward, after waiting a year from when I had first noticed she was relapsing we were ready.
I wonderful donor had been found in Switzerland❤️

Sophia coped incredibly well with transplant and within seven weeks we were home and ready to begin our new lives but sadly the worst was still to come.

Infection from a common virus caused an immune response in Sophia’s lung’s requiring emergency intensive care admission.
Sophia had to be put in an induced coma and incubated on a ventilator for 11 days.
I can’t explain what those days weeks and months felt like it’s beyond words. We sat with her every minute willing her to get better.

Thankfully she is a warrior and began to breathe on her own again 🙏
In the months since May, Sophia has had to learn all of her independence skills again, including learning to walk.
I couldn’t be prouder of her determination resilience and love of life.

This holiday will give her and I some precious time to heal from this gruelling year and keep moving forward

thank you 🙏