Lily, or Lil as she prefers to be called, has endured far more than any 16-year-old should be expected to, having been born with dystonic cerebral palsy – also referred to as dystonia. Lil has commenced year 10, is an avid history fan and a digital artist. She also loves to watch Brooklyn 99 in her spare time and says Gina is absolutely her favourite character!
Lil lives in the ACT with her parents Annie and Jim, siblings and, for a period of time, a foster child who lived with the family. Jim, who is currently Lil’s primary carer said, “at one time I had 4 children under the age of 8 in the house… there was rarely a dull moment!”
Lil recently enjoyed virtual visits through the Clown Doctors on Call program, a free-of-charge program funded by your generous donations. The program benefits children and young people who are receiving medical care in hospital or at home as an outpatient. Parents, carers, or healthcare staff can book individual video call visits with two Clown Doctors, with siblings and family members often joining the fun.
Says Jim, “Lil met the Clown Doctors in hospital when she was very young, but it’s her most recent encounter with them which sticks in our mind the most.”
Dystonia is marked by involuntary muscle contractions and movements that affect either one part or the entire body. A lack of movement meant that Lil’s hips didn’t develop normally, limiting her ability to learn to walk.
To rectify the issues with her hips, Lil has needed to undergo six major hip surgeries, at least one of which was not successful and resulted in Lil contracting blood poisoning. “It’s extremely hard as a parent to watch your child in pain, even if you understand the need for the surgery,” said Jim.
Adding to the pressure, the family was required to travel to the Children’s Hospital at Westmead in Sydney for Lil’s surgeries. “Being separated from the rest of the family was also very hard on us all. Life in hospital for any parent is extremely monotonous, which is where the distractions of the Clown Doctors become really important.”
Like so many others impacted by Covid-19 restrictions, The Humour Foundation needed to alter the way programs could be delivered, ensuring Clown Doctors could still interact with people in healthcare settings, whether in hospital or isolated at home. Clown Doctors on Call was born out of necessity and has been able to bring joy to so many people like Lil and Jim.
Lil’s reaction to the dancing competition that ensued during her tailored Clown Doctors on Call visit says it all, but in Lil’s words, “They made me laugh! They were so funny and really friendly.”
“They were hilarious, and this was one of the first times that I had seen Zoom used really well,” Jim told us.
“It was a truly interactive experience for Lil, and the fact that the Clown Doctors were literally in a different state, didn’t matter at all. We felt like we were really close to people, which was much needed during lockdown.
“It’s quite possible that Lil will need more surgery in the future, in which case a visit from the Clown Doctors would be most appreciated. For both the parents and the kids, they lighten tough times and help us all cope better. It’s great to have a laugh, and so lovely to see Lil laugh as well.”