Ruby is 6 and was born with a rare condition called WAGR syndrome.
WAGR syndrome is a disorder that affects many body systems. This is high risk of Wilms tumor, aniridia, genitourinary anomalies, and intellectual disability. Ruby is VI/blind. She is a very happy girl and loves attention. She has ongoing health issues.
Jenson is 2 and half years old. Jenson was diagnosed with west syndrome at 4months old. He had a really tough couple of years and the last 2 MRI scans have said he has neuro metabolic disease. They are still doing tests to know what type he has. Jenson's condition is short life limiting. But the last 6months Jenson has proved many Dr's and people wrong. He is doing amazing.
They have funded lots of sensory toys (The dark den is there favourite)
They also funded Jenson a footmuff to keep him warm over them cold days.
We go to stay and play sessions and it's nice to see other families and have a catch up, more importantly the kids get enjoyment out of it all.
Emily’s Star also funded £1000 Centre Parcs vouchers we were speechless!!!
Each year we have also had a photo shoot done , funded by Emily’s Star.🙈
I couldn't thank you guys enough for everything you have done for me Matt and our family. 🌟🌟 xx
Written by Mum, Kelly