Sam's journey

There’s a special reason why the community at St Joseph’s Catholic Primary School, Bundaberg went all out to mark Rare Disease Awareness Week recently.

Much-loved student Sam lives with Infantile Neuroaxonal Dystrophy (INAD), a rare condition affecting only 150 – 250 children worldwide. INAD is an inherited degenerative disorder affecting the body’s nervous system and how messages are transmitted from the brain to other parts of the body. There is no known cure.

“This is part of our journey alongside Sam,” explained St Joseph’s Principal, Monica White.

“We want to raise awareness that Sam lives with a life-limiting disease, and he’s not just a boy in a wheelchair,” Mrs White said.

The centrepiece of the week was the community viewing of Sam’s Journey, a video compiled by Sam’s family largely narrated by his brother speaking as Sam.

“We are very grateful to Sam’s remarkable parents, John and Teena, for the time and consideration they dedicated to providing a video with such a good balance of information, reflection and positivity,” Mrs White said.

“Sam copes with pain, dystonia and discomfort, but with the support, love and inclusion he receives from each and every person in his life, it brightens his days and gives him the strength to keep fighting this rare disease,” said Teena as part of her commentary in the video.

Sam’s Journey describes the stark reality of the progression of INAD whilst highlighting how the support of friend’s, family, carers and the school community have positively influenced the family’s life.

“With the help of my family, friends, carers and many others I have been able to live my best life. Going to the beach, farm visits, camping and exploring, waterplay and swimming, art and craft, and a good laugh with my family and friends,” Sam commented in the video.

“A big part of my journey is being part of the St Joseph’s community. I love coming to school to be with all my amazing friends. My teachers and supporting staff are wonderful and they give me so many opportunities just to be a kid,” Sam said.

St Joseph’s Awareness Week also included a whole school meditation session, shared book reading, prayer assembly focused on inclusivity, coffee and chat morning, and a presentation from Hummingbird House representatives.

Hummingbird House is Queensland’s only children’s hospice. Their purpose-built facility is designed to feel like a home away from home and provides specialised paediatric palliative care services to babies, children and young people with a life-limiting condition.

 Hummingbird House supports hundreds of families right across Queensland, including Sam’s family.

Sam referred to Hummingbird House as, “a magical place for families to take a break and enjoy precious time together.”

As part of Rare Diseases Awareness Week, St Joseph’s also held a colour run and free dress day fundraiser with all proceeds going to Hummingbird House.

Photo:

Sam leads the Colour Run at St Joseph's Catholic Primary School, Bundaberg raising funds for Rare Diseases Awareness Week.