“It features my wonderful daughter Millie and her story from birth to now. Millie was in intensive care at 5 1/2 weeks with heart failure and the road since has been a very rocky one. Millie has Alström Syndrome, she is registered blind and will continue to battle many severe medical conditions. She has and continues to inspire and amaze, we don’t know the future but we will not waste the present. Millie I adore and love you”
To raise awareness of Alström Syndrome UK please watch the video via the YouTube link and share on Facebook, Twitter and any other social networks you are involved with.
Many of you entered the Seeing Ear Poetry Competition and your poems are going to be published in the anthology, well done!
You can see all the winners at the link below:
The poems were written to commemorate the 100 year anniversary of the start of the 1st World War and are published below. Twins Katie and Hannah Beck (pictured here) and Hannah Bromley-Challenor have had theirs published.
Who will…March up the hill?
Who will…Fight the men?
Who will…Win the war?
Will you my laddie?
By Hannah Beck, aged 8 years old
Who will…March all day?
Who will…Dig trenches all night?
Who will…Wear wet dirty clothes?
Will you my laddie?
By Katie Beck aged 8 years old
Rain poured harder that night as if it was sad to see innocent brave men die.
They laid in lines of ten, men young and old were at their fatal end.
Telegrams sent to every family with the bodies of the brave.
Some were left. They were on their own now, in the pouring rain in a foreign field.
All because no-one could see or even remember a glimpse of who they once were.
They lay in holes and bomb shell holes alike, all in foreign mud and drowned in their own blood.
They were far from their true home where their loved ones and friends remembered the soldiers.
But one was given the chance. To return and show in the glory of the whole of Britain that he and only he will represent the lost men.
Ones who died in their duty to England, who never came back.
He is always there. Now, in the Abbey for his spirit is the one shoulder everyone can cry on.
By Hannah Bromley-Challenor aged 14 years old
ASUK members Curtis and Taylor won the novice goalball league and Liam won the intermediate league. Taylor ended up as leading goal scorer!
Liam (centre) has been playing goalball for 4 years and usually he trains 3-4 times a week. Liam gives his thoughts “I absolutely love it and although it’s a great physical workout I can play for hours as my mind is focused on the game and my technique to feel tired.”
Liam enjoys this sport so much he has even tried coaching!
Are you interested in playing goalball? Or becoming a coach or an official?
Goalball UK are launching new clubs around the country. Consequently a number of free ‘have a go’ sessions are being held for potential players, coaches, officials and anyone generally interested in the sport to come along and learn more about it.
You can find more information at http://www.goalballuk.com/
Liam has set a new marker for anyone suffering from rare diseases – by becoming the positive role model for disability in the National Diversity Awards!
Liam gained his most prestigious award yet – and, in doing so, introduced a whole new influential audience to the great work being done by Alström Syndrome UK.
Liam was nominated by his Mum Liz Little and she accompanied him to the Midland Hotel in Manchester in late September for the black tie awards ceremony sponsored by The Diversity Group – one-stop shop that delivers a wide range of multi-media services to reassure and encourage people from the most disadvantaged areas to further their careers.
“In all, there were over 8,000 nominations over all the categories and Liam was in the final three for his. We really didn’t think he stood much of a chance. In our typical fashion we got changed in a services toilet! We went in our scruffs and came out all dolled up!
“It was just like an award ceremony you see on TV and afterwards Liam did a bit of networking with a lady who works at an Asian newspaper, we enjoyed a three-course course meal, then it was award time.
“We were over the moon when Liam won, I walked him to the stage where he received his award from Jodie Cundy – paralympic star- then Brian Dowling (host of Big Brother) brought over the microphone for Liam to say a few words.
“Liam thanked Alström Syndrome UK, Living Paintings and The Children’s Society for all their support.
“Ruth Brown (the Voice) then sang a few songs and we got home around 2.30 in the morning,” explained Liz.
Liam had been nominated for the work he does for the three charities- work which includes street collections, training volunteers who want to work with children with disabilities, working with a group of young people with hidden disabilities to gain skills, confidence and Independence and going round the country giving speeches.
Liam Mackin (previously known as Liam Midwood) has made a bit of a name for himself at scrabble. In a recent scrabble competition at Shipley Scrabble Club in Yorkshire, Liam competed against people more than twice his age and won 2 of his 4 games. “I was amazed at how well he played,” says Kerry Leeson-Beevers.
Our picture shows Liam winning his second game!
All proceeds of the games were donated to AS UK and this was over £260
Listen to Liam turn traditional nursery rhymes on their heads.
Media Reviewed: March 2017
Next Review: March 2019