“My daughter Zarie is now 13 years old. She was diagnosed with an inoperable brain tumour at the age of 10 months. She underwent 18 months of chemotherapy and had many neurosurgical operations. As a result she lost her vision and her hearing in one ear.
She survived and has been tumour free for more than 12 years. Doctors treated her like their own child and were always there for her when needed. Every year was worrying when we had to wait for the results of her head scans but they remained the same.
The coming years were hard as there was minimal support. We had sad and very happy moments. But things became far worse when Zarie entered primary school; she became very unhappy and wanted to take her own life. She had just survived childhood cancer and now had to battle with an increasingly rigid educational system which was not made for vulnerable blind children like her.
She could not defend herself and I did not understand her difficulties at first. We were given a list of diagnoses by professionals ranging from depression, autism, anxiety disorder, core stability disorder to social communication difficulties.
I knew these (diagnoses) were not true. My daughter was always happy on holidays and weekends when not at school. Moreover, I had seen my daughter cantering on a horse on her own over the tobacco fields of Cuba like a jockey in a horse race without any fear. Falling off the horse and getting back on. I had seen her laughing and joking with other children and running faster than me. And I realised that she was a normal 13-year-old girl who had survived childhood cancer but struggled to survive in a complex educational, health, and social care system which was unable to look after disabled children like her.
Discovering LOOK UK
But then we joined LOOK and we learned that many parents and their children had encountered the same difficulties that we had faced. LOOK connected us with other parents and helped us to connect with other professionals. But most importantly LOOK helped us to overcome our frustrations in life and remember the happy moments we spend with our children especially those when our children do the impossible and “ride like a jockey in a horserace” without fears and being free of any constraints.
We learned through Charlotte Carson and Jennifer Bowen that there is light at the end of a long dark tunnel and there will be happiness. We just need to “look” for it.
Thank you to all amazing members of LOOK and especially Jennifer and Charlotte for what they are doing. Your amazing work will never be forgotten.”