Forever and Ava

This time last year we had no need for the Royal Children’s Hospital. Our almost 4 month old baby girl was thriving. 

On the 25th March last year, our world was turned upside down. Ava had what appeared to be a seizure and was rushed to hospital. 

It was discovered that Ava was experiencing Infantile Spasms - a severe form of early childhood epilepsy. 

This time last year, we would never have imagined the following words to enter our vocabulary: 

- hypsarrhythmia

- prednisolone 

- vigabatrin 

Ava has not had the first year of life we had imagined for her. Our first year as parents has been filled with the highest of highs and the lowest of lows. There is so much to Ava’s story, yet we are still working through processing everything that has happened and what is to come.

Ava’s journey with the Royal Children’s Hospital will be just that... A journey... It’s a road less traveled and we are taking everything in along the way. 

We have an incredible care team at RCH. We are grateful for her neurologists and the scientists who have seen her through 8 EEGs (electroencephalograms) this past year. Ava has spent her hospital stays in the Cockatoo Ward as well as being supported by the Wallaby Ward for ‘hospital at home’ care. 

Ava has a fantastic pediatrician who sees her regularly as well as other specialist teams and allied health professionals. 

Almost one year on, Ava’s epilepsy seems to be controlled. It did evolve from Infantile Spasms to another seizure type before we assumed it would (usually happening later in childhood). Ava is now prone to Tonic seizures (stiffening) and status epilepticus which she was hospitalised for most recently.

We are hoping to raise money for the RCH Good Friday Appeal this year to give back to the hospital that has provided Ava with a tremendous amount of care this past year. We also hope to catch the attention of the RCH through our efforts to seek out the possibility of channeling fundraising towards specialised, multidisciplinary clinics that support the care of rare neurological disorders. 

This weekend the three of us will be completing the Run for the Kids course along with Ava’s Auntie Candace and Zio Piero.

We would also like to take this opportunity thank our family and close friends for their ongoing support. 

If you are new here and still reading, we thank you also and hope that you can join in our efforts.

Love Andrew, Steph & Ava XXx