We started the Nathan Project for rare diseases because of my son, Nathan. My beautiful little boy was born with a rare disease called hypoplastic left heart syndrome (half a heart), and miraculously survived the open heart surgeries and months in intensive care in hospital. Sadly for Nathan, he developed a second rare disease known as early onset scoliosis (severe sideways curvature of the spine). This time, Nathan was not given a timely diagnosis, and could not access effective treatments. This had permanent, negative consequences on Nathan’s primary heart condition. As a result, Nathan developed high pulmonary (lung) pressures, and has recently been placed in palliative care. There are no further medical treatments indicated for him, and his condition is expected to deteriorate. Watch Nathan’s story here https://youtu.be/E1AhL7Mky_s.
Watching your child suffer has an indelible impact on your soul. I am forever changed. I wanted so much to help him but was limited in my ability to do so. Whilst I cannot stop the disease process nor his deterioration, I can make a contribution to the field of rare diseases. In 2009, I enrolled at Edith Cowan University, Western Australia, studying a Bachelor of Science, Master of Science, and now a PhD. My PhD is the research side of the Nathan Project.
As Nathan’s caregiver of 17 years, I have advocated and campaigned tirelessly so that my son could access new medical treatments here in Australia. So many times we were told there were no options left, but each time an option was found. Turning over every stone bought Nathan more years to enjoy his life. His life is a great success, and despite being in palliative care, we are still (in collaboration with his treating medical specialists) creating research solutions for him that may improve his function and quality of life.
Throughout this journey, we have met many kind and compassionate doctors, enthusiastic scientists, and inspiring children and families. Together, we have an incredible team. It is our hope, through evidence-based, empirical research, that we can improve health outcomes and quality of life for these kids. This is why we started. – Monique Garcia.