Rare diseases are defined as “life-threatening or chronically debilitating diseases which are of such low prevalence (1 in 2,000 people) that special combined efforts are needed to address them”. Rare diseases, also known as “orphan” or “neglected” diseases, each occur in small percentages of the population and are a global public health priority. Paradoxically when combined, rare diseases are common, with individual diseases numbering approximately 5,000-8,000, and those affected equating to around 7-8% of the population. Extrapolating this figure for Australia suggests approximately 2 million people are affected by rare diseases, with the majority (82%) of diseases having their onset in childhood.
The major problems with rare diseases include:
These problems significantly burden not only the affected child, but also their carers (usually the mother), families, clinicians, and the healthcare system itself. Despite current efforts to mitigate the impact of rare diseases, the health and wellbeing of these families continue to be adversely affected.
The Nathan Centre was founded by Monique Garcia, Nathan’s Mum. Nathan lived with two devastating rare diseases (hypoplastic left heart syndrome and early onset scoliosis). Nathan also suffered from perpetual happiness, with a smile permanently glued to his face. Nathan had a wicked sense of humour. His favourite things were his miniature schnauzer puppy Lannan, video games (Zelda, NBA2K, Nintendo) Lazarbeam, football, basketball, and ramen. Nathan loved nothing more than having a relaxing evening at home with his family with a biscuit and a lovely cup of tea. He simply loved life. Nathan passed away on the 4th September 2021, after 18 years of battling his rare diseases.
After the passing of Nathan, and with the help of her two close friends Sherelle Hodges and Michelle Rizza, Monique started a company called the Nathan Centre. We have now applied for charity status.
The Nathan Centre aims to provide personalised healthcare for children and their families, ultimately improving their health and wellbeing.
“We have formed a community of parents whose children were diagnosed with a rare disease, and by doing so we bring an expertise and understanding that can only come from living this journey. We know much more can and should be done, and together, we aim to make a significant contribution to this cause”
– Monique Garcia, CEO
The Nathan Centre imagine a centre of happiness and joy, and are developing six programs to help meet the needs of families. Each program has been named after a beautiful child who passed away after their battle with a rare disease. Our services include:
The Nathan Centre aims to relive the suffering and distress of children and their families impacted by rare diseases. Providing personalised healthcare will uncover multitudinous needs. Identifying and addressing these gaps child by child will lead to improved health and wellbeing, improved clinical management, and new research discoveries. Indeed, addressing the needs of one child will address the needs of other children living with the same problem. The result will be children and families LIVING BETTER LIVES.
Hot off the press!
Nathan Garcia’s incredible spirit and zest for life has been documented in this new short film by Pusher films. Click here to watch the trailer of Nathan’s upcoming short film A Defiantly Happy Story