Noah is from the idyllic island of Bali. He was fostered at 11 hours old and then adopted by Geoff and I, his Australian family, while we were living and working in Bali. He was a happy and healthy baby and met all his milestones. He spent his days going to the beach, riding horses, playing with friends and his beloved giant groodle dog, Nyame. His world was full of joy and laughter.

Noah absolutely loved performing. He just loved dancing, singing and was front and centre at kinder and school concerts, loving the audience and proud of remembering his steps. As a family, we travelled throughout Bali and Indonesia. Noah loved it. He loved adventures and going on boats and planes. He loved food and lived for spicy dishes and ‘nasi' rice. 

Noah was always smiling and never cried – not ever – nor did he ever throw tantrums. We used to say he is calm and almost zen because he is Balinese, and many share these gentle and kind traits. 

In hindsight, these characteristics may have been a symptom. There were other things too. Like an ever so slightly slurred speech (almost an American accent) and the occasional facial tick when he was tired. Any concerns I had, as a first-time mother, were always dismissed by others as being overprotective or living in a bilingual home (English & Indonesian).

Noah started having noticeable problems jumping and keeping up with his peers from about 3 1/2 to 4 years old. He loved horse riding, but when he got on the horse, it made him so happy, he passed out. We later found out he had cataplexy and narcolepsy brought on by joy and happiness. Noah then started having problems breathing and developed pneumonia too many times to count. We travelled all over Indonesia searching for answers but with no luck. 

The adoption process took almost 5 years, and while we loved our life in Bali, we could not travel to Australia for tests or diagnosis. (The government does not grant passports for children undertaking international adoption for fear families will simply leave the country and not return).

Noah and I finally arrived in Australia in 2019 and, after 5 months of tests, he was diagnosed with Niemann Pick Type C (NPC). NPC is a rare degenerative genetic disorder that is fatal. The body slowly malfunctions to the point where it can no longer go on. At this time, Noah was very unsteady on his feet. He could no longer run without falling over. He lost words and began answering questions with either single words or gestures. He also coughed and choked when eating. Up to 6 hours a day was spent slowly feeding, one small mouthful at a time.

Around this time was when we first heard the words ‘childhood dementia'. As so many of his symptoms were unknown to me, the word ‘dementia' stood out. It highlighted the severity of his disease.

The diagnosis was a most devastating and heartbreaking experience. It was a complete shock and very difficult to understand that our son would never grow up or grow old. I can't put into words the pain. As Noah was neurologically symptomatic, he was given only a few short years to live.

Noah's NPC is very aggressive and has taken so much from him in the last few years. Since 2020, he can no longer walk, talk or even sit up. This is because he has ataxia and muscular hypotonia. He is fed via a tube in his tummy because he cannot swallow any of the food he loves so much (dysphagia). He has loads of scary seizures (epilepsy, cataplexy) and can't express to anyone how he feels anymore. We try to interpret his slight gestures and what they mean and act accordingly. I talk to him about activities and which he may prefer. Sometimes he can kick his legs if it is something he wants to do or give me a sideways glance, meaning, “no way, mum!"

His future is very uncertain, and every day, he loses a little more control of his body and brain. He now requires 24-hour support to help him with movement, self-care, and live his best life. He no longer recognises people and places but is most happy doing the things he used to love as a 2 or 3-year-old. He loves music, especially anything Zumba, movies, and people from his past and shows his recognition. All symptoms are also symptoms of childhood dementia.

Geoff and I committed to doing everything we can to give him the best and happiest life possible. Medically, we have been working to include Noah in any medical trial which might help him with the symptoms or longevity.

This account was kindly shared by Jane in 2021. We are very, very sad to share that Noah died in 2022. He was 8.