Help Ruben, our little fighter

Our families and friends are very privileged to have Ruben, our rambunctious, truck loving little 4 year old in our lives. Unfortunately, about 1 year ago, Ruben became critically unwell, when his platelets, the little suckers responsible for preventing and stopping bleeding, plummeted. He has since undergone a lengthy and invasive investigatory process.

After sending blood results to America, we discovered that Ruben had a very rare genetic disorder, DADA2 (deficiency of adenosine deaminase 2) and secondary Evan’s syndrome, which can damage vital organs and their functions resulting in disability or death. So rare is DADA2 that Ruben is the only known child currently with the syndrome in all of Australia and one of 600 known in the entire world. Devastating.

With DADA2 comes declining health for Ruben who cannot adequately fight the bugs that we easily overcome, he is at risk of bruising/bleeding, and is at increased risk of stroke. Because of this, he is not able to start kindy or interact with many children. He currently undergoes weekly blood tests to check his platelet and blood levels, weekly injections to reduce his risk of stroke, has monthly day long infusions to boost his platelet levels as well as daily medications to keep these levels “acceptable”. He has experienced several other medical procedures, with many more scheduled in the near future.

Ruben’s only hope for treatment is to receive a bone marrow transplant, and after 9 months of searching, Ruben has finally been matched and will shortly start the long process of treatment including chemotherapy, bone marrow transplant and recovery.

His parents, Tiarn and Ben are doing their best to juggle his increasing daily needs with work, but it is getting increasingly difficult, both are needing to leave work for an extended period of time. When, Ruben receives his transplant, they will need to isolate for a significant part of the year, this includes a Hospital stay of a number of months and intensive post-transplant medical follow-up. So! They need our help to raise enough money so that they can be with Ruben during his ‘bubble’ time and continue to care for him daily without relying on external help which is increasingly risky for his health. Falling outside well-known diseases such as cancer, Tiarn and Ben are limited by the availability of resources in a sometimes black and white medical world, minimising options for assistance from government and community support services.

We understand the current financial climate is horrendous, and we all have limited spare funds, but we would be beyond grateful if you could donate any amount you can to Rubens fight. Your funds would go towards basic living costs e.g. rent, bills and food while Ben and Tiarn livelihood grinds to a halt, as well as necessities for Rubens isolation phase.

Thank you for taking your time to read about Rubens fight. Any support will make a world of difference!