Everything changed for our family on 1 February 2014, two days after our beautiful boy Ari’s fourth birthday. I couldn’t have known this at the time but on this day my son and I shared our last words with each other. We snuggled in together as we did most days for an afternoon nap. On this day, Ari was particularly tired. I had been growing increasingly worried as he had been recovering rather slowly from a bout of tonsillitis. His spirits were lifting but he was very weak. His balance and co-ordination had become significantly affected, so much so that he was swaying as he sat and walked. We had taken him to see doctors three times the week prior for treatment of his tonsillitis and to have his balance and co-ordination evaluated. It was believed at the time (not unreasonably) that the current infection he was fighting had caused a “flare-up” of a condition he had been diagnosed with some seven months earlier.
In July 2013 Ari experienced episodes of ataxia after a viral illness. After seeing his paediatrician and having an MRI, Ari was diagnosed with cerebellitis which is an inflammation of the cerebellum. We were relieved when we were told by the paediatrician that cerebellitis can occur after viral illnesses in children of Ari’s age and that it would resolve itself. We encouraged Ari to do activities that would support his motor development, and were encouraged by his continued progress over the subsequent months.
We experienced another set-back in October 2013 after having Ari’s vision assessed by an ophthalmologist. It had become apparent that Ari struggled to see in dim lighting. I recall the feeling of dread when the ophthalmologist advised me that Ari had damage to both his optic nerves which would cause permanent impairment to his vision. My mind immediately jumped to Ari’s future and how it would affect his opportunities for participation in normal activities like sports, driving a car or pursuing the career of his choice. We adjusted to the idea quickly knowing that as a family, we would do whatever Ari needed in order to support him to live the life of his dreams. We were told that the nerve damage may have been occurred either prior to or at the same time as the cerebellitis, either way it was seen as two episodes of seemingly bad luck.
On 6 January 2014, we got the news we were praying for. Ari was evaluated by his paediatric neurologist who assessed Ari and told us that it appeared that Ari had recovered from the episode of cerebellitis. His vision would require ongoing evaluation and assessment but there was no reason to believe that the episodes were connected. The relief was welcome to say the least; however it was short lived. Two days after his fourth birthday Ari had his first seizure which was to be one of many.
Within hours of being admitted to Royal Children’s ICU, Ari’s seizures were increasing in frequency and progressed until they were unrelenting. Despite the efforts of the ICU team, the paediatric team (headed by Dr. Geoff Wallace) and the metabolic team (headed by Dr. Jim McGill) Ari’s seizures were not able to be controlled or suppressed without the use of medication to place him in a medically induced coma.
I will never forget the moment we discovered that it was believed that Ari’s condition was being caused by mitochondrial disease. The neurologist who came in to see Ari at the hospital over the weekend told us that Ari was in “dire straits” and that the episode of cerebellitis we believed earlier to be a one-off event was actually likely to have been Ari’s first episode of decompensation due to mitochondrial disease. Ari’s decompensation progressed rapidly, and within two weeks of his admission, it became clear that the degree and rate of dysfunction that were occurring in his brain would not be compatible with life. Around 3.30pm on Monday 17 February 2014, my husband, Mark and I held on to our treasured, previously irrepressible boy as life support was discontinued and Ari released his last breath of air.
To say that this is Ari’s story is grossly misrepresenting his life. Ari was a tremendous young man. He brought life into parts of our souls that were previously dim. His energy, excitement, humour and imagination kept us all in perpetual wonder. He had a gift for changing song lyrics into comedic musical theatre. He could turn anything into a fire pole to slide down. He could role-play using his favourite characters’ names without once breaking character all day long. His hug would melt the world outside away if you were fortunate enough to be on the receiving end. These are just a snap shot of what Ari was about and of what we miss every second of every day. I will always be his “best girl”, my husband Mark will always be his “Daddy-Doddy” and he will always be our “Ari-boy”.