Today I met George for the first time. He's my Mum's cousin's daughter's little one. He's absolutely gorgeous. Incredible smiley. Very alert and inquisitive. Loves bubbles and sports. He's also just been diagnosed with a very rare (2 children in the UK are born with it each year) condition which means that he probably won't live past his 3rd birthday (he's currently 10-and-a-bit months old). It's heartbreaking. His laugh could fix the most rubbish or rubbishy days. The world is just cruel sometimes.
The drive over there was manky because the weather was manky. But it was SO lovely to go over there. It was lovely to catch up with his Mum and hear about different members of my extended family who I don't really know. It's nice to feel some connection to Mum's family. I also never realised quite how close some of these family members live.
What a sweet babe- I hope and pray that they will make progress with a cure for whatever he has before that 3rd birthday. So many advances are out there in science today. You never know what cure they will find next. Beautiful shot!
@overalvandaan I think it's one of my favourite photos ever! @pyrrhula thank you xxx @olivetreeann Thank you so much. He has Menkes disease so unfortunately there is no known cure and it's so rare that there's very little research into it :( @linnypinny thank you xxx @kjarn hank you. That would be nice for sure! @kali66 hank you. He is so loved. The amount that's been raised in such a short time shows that! @craftymeg thank you xxx
So much delight encapsulated in this image but such a sad back story. A short life packed full of joy is still of immeasurable worth. Enjoy all your precious moments.
October 21st, 2018
Leave a Comment
Sign up for a free account or Sign in to post a comment.
@pyrrhula thank you xxx
@olivetreeann Thank you so much. He has Menkes disease so unfortunately there is no known cure and it's so rare that there's very little research into it :(
@linnypinny thank you xxx
@kjarn hank you. That would be nice for sure!
@kali66 hank you. He is so loved. The amount that's been raised in such a short time shows that!
@craftymeg thank you xxx