Marco Russian

I am walking 35km in memory of Ari Rotolone

This June I will be taking part of the bloody long walk, to raise funds for MITO. My beautiful partner has a personal connection to this cause, and I am honoured to support her in dedicating this to Ari Rotolone.

Ari passed away at the young age of just 4 in 2014.

Here is my partner's connection to this awful disease. 

"Ari's parents Mark and Vanessa owned the local restaurant, which we would frequent, and we shared the news with our parents we were expecting our second baby Olive. I knew how hard Mark and Vanessa worked, and being in the same restaurant industry I could appreciate everything they were doing. Working, parenting, and always being so warm and welcoming.

Ari was born around the same time as our older daughter Poppy. I can remember him at the restaurant, such a gorgeous little boy.

When Ari passed away suddenly I couldn’t imagine the pain his family went through. I didn’t know what to say. Or do. And wished there were something I could do. That devastation and loss, I just couldn’t comprehend, and my heart broke for them. I have thought of Ari, and his family ever since.

Now is my chance to honour Ari, and help raise funds for this disease.

Im grateful to Mark and Vanessa for allowing me to share their story, for my dedication to Ari.

Mitochondrial disease is poorly understood, rare and complex. It can also be fatal and took the life of four-year-old Ari in a very short time.

Ari was a beautiful bright little boy,  happy and  healthy. He loved making anything into a fire pole to play on, and had that amazing energy of a growing boy.

He was hilarious. He would make his family laugh, and had an incredible sense of humour.

 When he was about three, Ari developed bouts of problems with coordination and movement. This was diagnosed as cerebellitis and Aris parents Mark and Vanessa, were assured by his paediatrician that with the right therapy and treatment he would recover fully from this condition.

After some short months, Ari experienced a seizure and was taken to the hospital where his parents were delivered the devastating news 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 told Ari’s parents that Ari was in “dire straits” and that the episode of cerebellitis they 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. On Monday 17 February 2014, Ari passed away , a short time after turning 4."

I know money is hard to come by at the moment, anything no matter how small, will help me raise funds for research to help no other family having to experience this devastating loss. Thank you so much.

Forever in our hearts Ari.

THANK YOU