Monday, 27 May 2013

Charity Spotlight V.7

Hitting the headlines this month, for a devastating reason, is a couple and their son from my hometown of Berwick Upon Tweed. Rachael and Stuart were recently told that their beautiful little 11 month old boy, Roman, has a rare terminal disease by the name of alphers and have been staggered by the amense support and attention the story has gathered so far.

Alphers disease effects the central nervous system and can lead to blindness, deafness, seizures, developmental delays and also liver dysfunction, meaning any sufferers will require 24 hour care and specialist equipment to help them best live their day to day life. 
So rare that it only effects around 1 in 200,000 people, this condition needs to be made more aware of with some doctors unable to diagnose right away. You can read more on Alphers here.

All that being said, the family are determined to give Roman the best possible life they can, which won't come without a price. So far the town have rallied around amazingly and have raised over £7,000+ already to help as well as comedian Jason Manford donating all of his takings from the 5 performances he put on at Berwick Maltings Theater. This is a great start, but to acquire a sensory room, specialist bed, chair etc they need much more.

If you can spare a few pounds and would like to support the cause, please CLICK HERE to donate online. 
To read more updates of how the fundraising is progressing or get in touch for any raffle donations etc, you can visit the Help for Roman facebook page.

Although I've been unable to locate a charity that specifically works towards helping those with Alphers, here are a few other links worth a look at.
Haileys Wish - Raising awareness and funds for children with mitochondrial diseases.
The Children's Mitochondrial Disease Network
Make A Wish UK

(Below is the ITV news report from 26th May 2013.)

Please show your love and support by donating where you can and sharing this story with others.
Lets also, spread the word of this nasty disease. My best wishes and love are sent to Roman and his Mammy and Daddy. 

1 comment:

  1. This is so sad. My prayers go out to them, and I retweeted this too.