At 6 weeks old, it was discovered that Lili had enlarged arachnoid cysts - a very rare disorder.
"When you first discover that your child has a condition which requires neurosurgery there is a lot to take in and try to understand. The whole process, not only for your child but also as a parent is quite overwhelming, however when you have great surgeons and specialists that are really passionate about their chosen field it makes the journey much easier.” “To know that you are in great hands gives you a peace of mind that you are doing the best for your child”. Lili's parents, Ally and Ryan.
“When our daughter Lili was 6 weeks old our paediatrician observed that her head was growing at a faster rate than was expected and this started her journey. It started with an ultrasound and then several MRI’s which lead to the discovery that she had 2 significantly sized arachnoid cysts. Lili had surgery and a shunt was placed in the larger of the 2 cysts to drain the fluid out of her head and into her stomach.
We have been very fortunate that Lili has reached all of her milestones to date. Lili is now 2 years old and is having regular check-ups with her neurosurgeon.
Last year, I decided to support and raise money for the NRF in the City to Bay. Having a child who needs to be under the care of a neurosurgeon for the rest of her life and the possibility that she will need additional surgery; I now see how important it is that neurosurgical research is undertaken to not only discover new cures but to also improve technology.
Our neurosurgeons made the whole process with our daughter as stress free as possible. We are very fortunate that we have a happy healthy little girl.”
Thank you Ally, Ryan and Lili from the Neurosurgical Research Foundation for sharing your story.