Diagnosis: Acute Disseminated Encephalomyelitis

Queensland, Australia

Max was a very healthy and active seven-year-old boy. He was running around with his sisters in the backyard one Sunday afternoon when he suddenly came inside in hysterics complaining of a sore neck. After pain killers and a rest, he was quiet and out of pain for the afternoon. We suspected a pulled muscle. That night at bed time, Max told us that his arms felt fuzzy and he couldn’t see the TV properly, and within minutes he collapsed on the floor, unable to move from the neck down.

He was rushed to the Lady Cilento Children’s Hospital (LCCH) from our local St Vincent’s. After two spinal taps, CTs, blood draws, MRIs and more and within 24 hours of collapse, Max was diagnosed with acute onset Transverse Myelitis with inflammation in his brain stem, C1, C2 and C3. Max had been ventilated on the way to the LCCH and was in an induced coma. We were told not to expect any movement for a long while when he wakes up, and when he did he was paralyzed from the neck down. We were devastated but over the next week, Max was slowly brought out of his induced coma, taken off the ventilator and after eight days in PICU, he wriggled his finger and was moved to the neuro ward and then on Day 10, to rehab.

On Max’s first day in rehab, he took his first assisted, wobbly and weak steps over to his wheelchair, and there was no stopping him from there. Max defied the odds and spent only one month in the hospital with his rehab physiotherapist having to slow him down rather than encourage him. He left the hospital and came home in a wheelchair but wobbled his way out of the rehab ward on his own two legs. Max fell ill 16 months ago now, and he still, today, requires Botox and weekly physical therapy. He has bowel and tummy issues, has a weak core and wobbly gait but he is doing everything that he used to do before TM decided to crash so violently into our lives. We are so very grateful for his recovery and thank God every moment that he is still here with us and fighting this illness so bravely. We have found the most amazing support network both here in Australia and also overseas, being so rare, it is these individuals that help us cope and carry on. Max is now a healthy eight-year-old and the strongest, most resilient little guy I know. He will continue to get better every day because he has the attitude that there simply is no other choice.

Rachel Bennett