Today, we’re inspired to share an incredible story – that of Macy, who continues to thrive against all odds. At just 11 weeks of age, Macy, now five, was diagnosed with a rare genetic disorder that few doctors in Australia had even heard of, let alone treated. Generalised arterial calcification of infancy (GACI) is a progressive, lifelong disease which causes an abnormal build-up of calcium in the walls of arteries, and can lead to strokes, heart failure, and death.
But Macy is a fighter.
“No one day is ever a given, and every day’s a blessing.””
~Kate, Macy’s mum
Macy survived the most life-threatening early-life nights in hospital, and slowly rallied to regain her strength. Returning home, Macy had just celebrated her first birthday, and her battle with GACI was starting to look brighter. But, over the following few years, Macy ran into further challenges. Now, in the past six months, Macy has developed complications that impact normal blood flow to her brain, likely requiring cerebral revascularisation surgery before the end of the year.
But there are still important bright spots.
Described as a little “”want to be botanist”” by her family, Macy is incredibly keen to start school next year, make friends like every other kid, and play. Frequent medical appointments and hospitalisations will make this more difficult but there’s hope on the horizon.
When Macy starts school next year, a MissingSchool telepresence robot will be her link to her friends, offering the opportunity to join her teachers and peers, whether she’s at home or in hospital. This technology is set to bring life-changing benefits to Macy, ensuring her continuous access to education and sense of belonging among her new school friends.
Macy’s condition is unpredictable which means she might not be at school for fun events like Book Week, or a Disney dress up. But with the telepresence robot, she can make friends and keep in touch ‘virtually’ or put on her Disney costume in the hospital room and be seen, heard, and included, which is the most important thing for her.
In the face of uncertainty, Macy’s future is bright, and she’s eager to embrace the opportunities that lie ahead. Her family’s unwavering love and support, along with the power of technology and her willing and inclusive school will help Macy’s school dreams come true. She even jokes that her brother will want a robot of his own to help him connect to school too!
Macy’s journey reminds us that hope and resilience can overcome even the toughest challenges. We look forward to witnessing the incredible journey that lies ahead for this extraordinary soon-to-be student.
You can read more about Macy’s story on our brand new website, and how it featured in our launch of the National Insights for Education Directory building alliances at the intersection of health and education.
It would be impossible for us to stay the course for kids like Macy without you, our community.
There are many ways to help:
- follow along and cheer us on Facebook, Instagram, and LinkedIn
- share this newsletter with your family, friends, or colleagues so we can reach more sick kids, and
- donate towards getting a seriously sick child back into their classroom.
Every action moves us closer to the finish line: a world where every sick child is seen and heard.
Let’s keep connecting.
