On Grace’s first birthday {one month before her diagnosis}, we had an amazing birthday miracle. It was the first and only time that she has ever reached out and put birthday cake into her mouth. On her second birthday, she was quite lethargic and didn’t really care about anything going on so that was difficult...
By the way…who ever came up with the nickname for Rett girls “Silent Angels”? And who else out there laughs when they hear that? My angel is NOT silent. She doesn’t speak, but she sure does scream, screech and shout ‘BA BA BA BA’ when she wants her bottle! In fact, this week she’s discovered...
Wow what a touching day we had yesterday. Last week, I posted to explain how our friend, Elaine, who has cancer and will begin radiotherapy this week, decided to lose her hair on her own terms and raise money for Rett Syndrome in the process. Leading up to the ‘shearing’ party, The News ran an...
The sun was shining down us on, warm and bright as we watched all of the other families with wheel chairs cross the lawn at our favourite park. “There’s one. There’s one!” Steven and I whispered to eachother, meaning that by the looks of the chair, it must be the first guest we were waiting...
Wow what an amazing time we’re having on holiday in Orlando. After these last 6 months since Grace first ‘came down’ with RS, we really REALLY needed a break and I won a few photo competitions which enabled us to go on holiday for free! You probably know by now that we’re Christians. And like...
Wow WOW! Gracie got her wheelchair yesterday and it’s so so lovely and exactly what she needed. The man was so kind – he let us keep it because of our trip to Florida. He allowed us to pay him the £1000 which we’ve raised and pay him the other £1000 as it comes in...
