Meet Hamish

Hamish is our oldest child - he just turned 7. He has two sisters Audrey 5 and Isabelle 3. Hamish loves music - mostly Super Simple songs, Cocomelon and occasionally some classical music. Hamish would listen to music all day every day if we let him!
When Hamish was born we were ecstatic with the arrival of our first child and the commencement of our life as a family - we were blessed with a healthy little boy. Little did we know the journey our little man would take us on. Hamish was an extremely unsettled baby and I found the whole experience of new motherhood extremely overwhelming. We soon came to see this was not the journey of other mothers and Hamish did not seem to engage with me. After seeking multiple avenues and starting physio for what we thought was slight head lag at 4 months it started to become apparent how different things were. We started looking for answers to help our son, as Hamish wasn’t engaging with us, showing interest in toys or anything else for that fact. We started early intervention Occupational Therapy, Physiotherapy and Speech Therapy by age 6 months and finally got a diagnosis around 14 months after WES testing identified Hamish had MEF2C, an extremely rare condition with around 360 individuals worldwide currently diagnosed. Hamish presents with multiple challenges which he has worked ever so hard to reduce. Since the age of 2 he has completed 14 intensive therapy programs at the Neurological and Physical Abilitation (NAPA) centre, each 3-weeks long, equating to 840hrs. This therapy has given us hope he will one day walk independently. He is ever so close and has worked exceptionally hard over this time, developing his skills and stamina. Hamish has little-to-no independence. Currently we feed, dress and bath him. He uses an AAC device for communication. At this stage it is unclear, but we are hopeful that someday we may understand his needs clearly with a form of communication whether it verbal, sign or AAC. The majority of our family time and activity revolves around therapy to help improve Hamish’s skills. We hope that through medical advances all our futures may look a little brighter. We love our little man – however the journey has been very tough on our family, with his sisters often missing out on experiences they shouldn’t have to.