This week is our first Rare Chromosome Disorder awareness week. Obviously its not the first ever, but its the first since it became a major part of our life and if I’m honest the first time ive ever been aware of it! It’s crazy really when you realise that although each unique disorder is incredibly rare, collectivly rare chromosome disorders are actually quite common. At least 1 in 200 children is born with a rare chromo disorder (many will go undiagnosed so this number is probably alot higher). That’s compared to say 1 in 700 born with Down syndrome, so it actually not that rare to be rare!
This week I want to reflect on how far we’ve come since Immy’s diagnosis. I’ve certainly learnt alot about genetics, but its also opened my eyes to what feels like a whole new world. One filled with differences and strength and heart break and laughter and incredibly amounts of love. I’m grateful for the other parents ive met who take the time to talk to me, in real life or online, even when they have their own battles to fight.
I want to write more this week about our journey so far, how life has changed and about the incredible people we are meeting along the way, but for now, with Imogen asleep on my lap, I will just share some picture of her in her gorgeous new glasses and then try and drink my cup of tea while its still kind of warm!