November is DiGeorge Awareness month (22q11) and every November I raise awareness for this rare condition which Henry has.  It is a common as Downs Syndrome, but the least known about.  Known as “CATCH-22”, a pneumonic for the symptoms, it affects approximately 1 in every 4000 people and is a life long condition with many characteristics including Cardiac conditions, autoimmune disorders & speech delays.

Some of you will know that Henry falls within the Shielding Category currently because of his Heart and immunology status, as do so many of his friends and other children with complex genetic conditions.  He is staying at his mums and will remain there, due to work I won’t be able to see him until June at the earliest. This is extremely difficult for me as he really is my little hero, but worse for them as they just can’t go out, which at his age, they just don’t understand.

DiGeorge awareness day falls on the 22nd November (22/11) every year. Simultaneously in November is Children in Need. Henry benefits from the grants that Children in Need give local charities who support children like him in the Community.  Organisations such as The Alkham Valley Project which Henry attends, provides horse riding to Children with special needs.  Those Children, like Henry, who are currently shielded, and for obvious reasons, can’t go out and access these activities, which gives them so much freedom, normality, and a sense of inclusion.

To that end, for the last half of this year I aim to not only raise awareness for DiGeorge Syndrome as I usually would, but simultaneously raise money for Children in Need. The aim is to run 33 Virtual Races (a combination of 22 & 11) between now and November. The Virtual runner app is a virtual road racing app which also donates a percentage of entry fees to other charities. Being fairly new to running in any format, this will be quite interesting as well as challenging, but so many will benefit as a result. The cost of those races I am covering myself.

I’m not asking for much as I know how stretched people are, a small donation to my justgiving, help me raise some awareness?  You can even join me and take part yourself if you want in raising some awareness for DiGeorge! - please share my justgiving page or follow the instagram page I have set up, ask for donations for your own efforts? I don’t expect to raise much in the current climate but it would mean a lot to me, and it will all help. I have a limited amount of t-shirts to donate to top earners!!

Its a little ask, with a big meaning, especially for the children who don’t understand all this and currently can’t leave home and one day will want to get back to normal, they need these community projects, and we’d really appreciate your help - Support Children in Need and help this smaller vital projects Keep Going. 

#childreninneed2020 #digeorgeawareness #22q11deletionsyndrome #catch22 #virtualrunner #keepthedistance #22qaware