We recently met Cheryl online via Twitter, another one of our fabulous followers who regularly retweets us and engages with us. She happened to mention her Charity Evening coming up on 5th May in Chester, Cheshire. The charity night is being held in Telfords Warehouse in Chester and there will be live music from Tiro Lark and lots of great raffle prizes. To find out more and get your tickets for this event please visit the official Nurses for Angels facebook page. You can also call Dani on 07703 527170 for more information. We felt compelled to ask more about Cheryl, her family life and her campaigning to raising awareness of Angelman syndrome, she very kindly wrote the following blog for us.
This time last year, we had the devastating news (at the time) that our son has Angelman syndrome. This syndrome is very rare, with less than 1000 cases in the UK. There is little awareness here and I have been trying to change that! I think it was like therapy for me, instead of getting depressed, I got proactive! I soon joined twitter and have gained many followers.. however I kept feeling I needed to do more.
Angelman syndrome is a neuro genetic disorder affecting chromosome 15.. Jack (my son) has the most severe form as he is classed as deletion rather than mutation (part of the chromosome is missing, rather than abnormal). This tiny thing causes severe learning difficulties, epilepsy, poor balance, many never talk or speak just a few words and many never walk. I am hopeful for Jack and I will always stay positive for him. The plus side is he is very happy, laughs at the slightest stimulation and loves life.. his bond with dad and granddad and of course me is so lovely to see. He communicates in his own way and is absolutely beautiful.
Last year I did the Wirral walk and raised £2000 for the UK charity ASSERT, this charity has helped us a lot, I have also found another supportive organisation in America. FAST was set up by the mother of a child with Angelman and she has helped raiser millions for research and truly believes in a cure.
I do accept Jack is who he is and I would hate to change him, rather unlock the doors for him so to speak.
Fast forward to a couple of weeks ago, and after being off sick from work as jack was having up to 10 seizures a day..this is also part of his condition and it really knocked me and his dad for 6 seeing him like that, the first time I felt truly helpless since diagnosis, my colleagues came to visit me with a bunch of flowers and (nurses for angels) was born! They are nurses working in the Chester area, and have been absolutely amazing, giving up their free time organising our event, contacting everyone and anyone, setting up facebook and twitter page, getting a great band, creating flyers and tickets.. I could go on! They really are angels and I am so overwhelmed by all of the support for our jack.
The money raised will go to jacks specialist school in flint Ysgol Pen Coch, a truly wonderful school that are so amazing with our children of varying abilities.. I really hope I can help them as they have helped us so much xx
I honestly think that Jack is the reason I am supposed to be here, I cant even remember my life before him, but I am sure it must have been pretty boring!
Please like and share the official Nurses for Angels Facebook page