Unique interview with Michelle Novelli for Rarechromoday 2024

Unique CEO Sarah Wynn interviews Michelle Novelli. Michelle is the wife of Chef and Restaurateur Jean-Christophe Novelli and talks about their son's rare chromosome disorder. Michelle and Jean-Christophe want to shout out to all the other parents out there who are doing a great job against all odds and acknowledge the help and support they received from Unique.

Thank you for sharing your story Michelle - Valentino sounds like a wonderful spirited young boy and you and Jean-Christophe are doing an amazing job as parents! My daughter, Molly, was born with a rare chromosome disorder in 2004, (7q36.1-36.3), I remember the early days very clearly. It felt so lonely and isolating but like you, I learnt to navigate the system of health and disability and became a strong advocate for the disability community and for our child's needs. Our daughter is also autistic and has ADHD and behavourial challenges but has amazed us with her progress over the years, it has always been slow but she continues to learn. It's true that our kids show us a way to look at the world we would never otherwise have discovered. Best wishes to you and your family!

[beingrare]

Great job! Love the agility and swimming like a fish super-power of Valentino... We're 25 years further on and recognise the description of no-filters directness, dancing ("shimmying" in the case of our daughter, sometimes to external music and sometimes to her internal rhythms!), behaviour that makes perfect sense to her and often very little to the rest of us until we catch up, total honesty... what you see is what you get. Somehow we have arrived in "the future". The path was indescribable and yet organic, small steps and almost imperceptible changes, management of challenges all the way with help from many people. The future seems to be what you make it. Statutory and other services may encourage but cannot solve issues or provide answers. It might be useful to have a place where Unique adults and their companions/carers provide information on actual lifestyles