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Children's Tumour Foundation of Australia

Ainsleigh's Story

Ainsleigh's mum Lee-Anne has shared her daughter's story.

At 9 ½ weeks of age, Ainsleigh spent four days in Campbelltown hospital in the children’s ward for bronchiolitis. Upon final checks to be able to go home, the hospital paediatrician Dr Lok checked Ainsleigh and noticed she had lots of spots - what we as parents thought were just birthmarks.

Ainsleigh and family | Children's Tumour Foundation

Dr Lok explained that the spots could be related to a genetic condition called Neurofibromatosis and that the spots are called café au lait spots. So, a week later we saw Dr Lok again to get the ball rolling for answers.  

Ainsleigh first saw the genetic clinic at Liverpool Hospital who then sent her for testing. She was 3 months old at this stage and we got the positive diagnosis for Ainsleigh having NF1 when she was 6 months old. Due to us not knowing of any family history it was decided that the whole family would get tested and it was at this point that we found out that the NF had spontaneously started with Ainsleigh. She has had regular visits with doctors/specialists since being diagnosed.

Ainsleigh was two years old when she had her first CT scan to check if anything was happening inside her body. The results of these scans showed she has two Optic Pathway Gliomas (OPG), one on each optic nerve.

Ainsleigh has had two more MRI’s since being diagnosed with OPG and it was great news that they haven’t changed, so they remain closely monitored.

Ainsleigh is now three years old and is loves spending time with her family, going to pre-school and playing with her friends. 

We hope that Ainsleigh grows up to be aware fully of her condition but have a never say never attitude and not give up on whatever she puts her mind to.