On the 12th of December, Margot entered the world, eight weeks premature. At just 19 days old, she was diagnosed with the extremely rare genetic condition known as Trisomy 9 Mosaicism. This condition meant she had a third copy of the 9th chromosome in some of her cells, setting her on a path that few had traveled before. With only 100 known cases worldwide, Margot’s family faced uncertainty and an unfamiliar road ahead.
It was during this time that Margot’s parents, Victoria and Greg, were introduced to Jessie May. The hospital referred them, and soon after, they received a call from a warm and friendly voice that introduced them to the Jessie May team. Initially skeptical about the potential benefits, they soon realised how wrong they had been. The three-hour visits from Jessie May turned out to be invaluable, providing both practical respite time and much-needed emotional support.
Margot’s needs are exceptionally specialized, and the continuity of care offered by Jessie May proved to be a game-changer for the Griffiths family. Unlike hospital relationships, where frequent changes occur, Jessie May’s consistent and familiar faces provided comfort and a natural continuation of care. The emotional support extended to the family was equally crucial, as they navigated the challenges of raising a child with a disability.
Over time, Jessie May seamlessly integrated into the Griffiths’ home life, becoming more than just a care provider. Lois and Ash, two of the Jessie May nurses, formed a bond with Margot that extended beyond professionalism. They became friends, offering expert care with genuine love and concern. The impact of this unique service cannot be overstated, as the Griffiths now cannot imagine life without Jessie May’s presence.
Reflecting on their journey, both Victoria and Greg expressed deep gratitude for the support they received from Jessie May. Without the organisation and the generosity of its supporters, their lives as a family, including Margot’s older sister Mimi, would have been severely impacted. Jessie May’s care and guidance have been truly invaluable, fostering Margot’s development and offering unparalleled support to the entire family.
Greg, Margot’s dad says “I can’t imagine life without Jessie May – they have become an integral part of Margot’s life, our lives and they give us that huge love and support that is invaluable. You’ve only got to see in terms of how they have integrated with our family and the development and support they give Margot for the time being. It’s a very unique service that they offer and I would encourage anyone to support them.
We’d also like to thank everybody at Jessie May for the support that we have received since we have been working together. As a family we have benefitted hugely, and we love the interaction and engagement that you give us and the benefit that you give to Margot. So, thank you from everyone at the Griffiths family, keep up the great work and we just hope that other families get to benefit and appreciate the support that you’ve given us.”
As we celebrate the incredible work of Jessie May, let us recognise the power of compassion and the difference it makes in the lives of families like the Griffiths. We really can make a lasting impact on the lives of those who need it most.