Our Riley
This is Riley, he is 14 months old and he has an undiagnosed neurological disorder/syndrome.
He suffers from a severe form of epilepsy known as infantile spasms, low muscle tone (hypotonia), he is purely peg fed due to an unsafe swallow, has severe reflux and requires oxygen 24/7.
Emily's Star have been amazing....they provided Riley with a big box full of brand new sensory toys when we first joined the complex care nursing team which he still loves now!
We have been to visit Santa and to see 'The gruffalo' as a family with Emily's Star, something that is priceless enabling Riley to enjoy trips out with his brothers included. We had a family photoshoot courtesy of Emily's Star which was lovely and we can't thank Katie and her team enough for everything they do.
Emily's Star hasn't just been about Riley either, what I love about the charity is the involvement with the other siblings too, the overall view of making memories and the incredible support from each of the other parents I've been lucky enough to meet so far whilst in & out of hospital.
Well done Katie for all the hard work that you and your team put into making Emily's Star the amazing charity that it is in the name of your shining Star ⭐️💫⭐️ and thank you for supporting us 😘 xx
Written by mum, Jenny
He suffers from a severe form of epilepsy known as infantile spasms, low muscle tone (hypotonia), he is purely peg fed due to an unsafe swallow, has severe reflux and requires oxygen 24/7.
Emily's Star have been amazing....they provided Riley with a big box full of brand new sensory toys when we first joined the complex care nursing team which he still loves now!
We have been to visit Santa and to see 'The gruffalo' as a family with Emily's Star, something that is priceless enabling Riley to enjoy trips out with his brothers included. We had a family photoshoot courtesy of Emily's Star which was lovely and we can't thank Katie and her team enough for everything they do.
Emily's Star hasn't just been about Riley either, what I love about the charity is the involvement with the other siblings too, the overall view of making memories and the incredible support from each of the other parents I've been lucky enough to meet so far whilst in & out of hospital.
Well done Katie for all the hard work that you and your team put into making Emily's Star the amazing charity that it is in the name of your shining Star ⭐️💫⭐️ and thank you for supporting us 😘 xx
Written by mum, Jenny