Neo is an active 12-year-old boy. He loves dogs, riding his bike, soccer, lego and, like most siblings, annoying his older sister.
Neo stayed at RMHC Sydney in 2017 for 37 nights. After his scary diagnosis four years ago, he has been seizure-free for 12 months. But the road to recovery has had its fair share of bumps.
Neo's illness started four years ago with flu-like symptoms. He was sleepy, had abdominal pain and the Doctor first thought it might be appendicitis. But when the scan showed nothing of note and Neo’s condition was significantly deteriorating with no apparent reason, it was time to visit the ER.
New scans showed Neo had swelling on the brain and spinal cord, and it was decided he needed to be transported to a paediatric ICU asap.
His mum remembers "A helicopter was arranged, then a plane, however, it was June, middle of winter, and an extreme fog prevented anything flying out that night. The remaining option was an ambulance. Neo was put into an induced coma and driven away. The drive to Sydney was excruciating, not knowing if he would make it. We arrived about 3.30am at Sydney Children’s Hospital, until that day a hospital we had never really heard of."
The journey to Sydney was scary enough for the family, but it was still unclear what Neo had or how he got it.
"Neo was kept in an isolated room in the ICU. By this stage we had not slept in days and the Ronald McDonald day room was a godsend for a hot shower a few hours’ sleep, and a cuppa tea in those first 24 hours. We spent a few nights in the hospital emergency accommodation (windowless bedroom with hospital blankets) before a room at Ronald McDonald House Randwick was secured for us."
Neo was in a coma for a week, and a diagnosis was finally made: Acute Disseminated Encephalomyelitis. Neo remained in the ICU for 10 days.
"Having RMHC so close meant if I wanted to see him in the middle of the night I could easily pop up and be by his bedside within 5 minutes. I would not have been able to do this had we not been staying on the hospital campus. When Neo left ICU for the ward, my husband and I would do one night on, one night off staying in the room with him.
The sponsor dinner nights at the House became something we looked forward to, especially the menus on the chalkboard, and I could see the teams volunteering really got a kick out of feeding very grateful and exhausted parents and families. The House was so comfortable, homey, and a place to relax away from the intensity and drama of the hospital. The team was so kind, and my daughter, who was 10 at the time, was able to come up and stay with us for a period.
Once on the ward, Neo underwent intense rehabilitation and had to learn how to walk and talk again. Being an energetic boy, he was able to make a full recovery from his motor weakness.
"We lived at the Randwick House for four weeks, and have continued to stay there multiple times a year to attend medical appointments at the hospital.
It took a village to look after Neo and the family during this traumatic time, and I include RMHC Randwick in that contributing mix and will be forever grateful.
We have had some bumps in the road with Neo having a few seizures since his initial illness, however, he is fit and well and has been seizure free for 12 months."
Neo's story is one of our many stories from the House. You can support more families at the House by making a donation.
