Launch of Sturge-Weber syndrome event

A Norfolk’s mother devoted love for little Angelina

Today sees the launch of a debut event to raise the profile of Sturge-Weber syndrome organised by the charity Sturge Weber UK. The worthy cause is being backed by Lisa Massingham from Gresham, Holt.

Lisa, a trustee of the charity, is a full-time carer for her daughter Angelina Mills, four, who was diagnosed with the Sturge-Weber syndrome at just 18 weeks old. The charity was formed in 1990 and Lisa is hoping the event will raise awareness of the condition affecting many children. It’s been a constant battle for Little Angelina that’s left her with various problems including epilepsy, learning delay and a port wine stain on her face.

Lisa couldn’t emphasize enough what the charity day meant to her “It’s important for me that I know in my heart there isn’t a child left with the condition being undiagnosed. Without the charity I would be unaware of all the information I need and Angelina may not be at the positive stage she is today” Lisa is hoping next year will be an even bigger step towards making people aware and helping other children.

People are being encouraged to like and share the Sturge Weber UK Facebook page www.facebook.com/SturgeWeberAware as well as tweet @SturgeWeberUK

In June 2010 Angelina underwent successful surgery at Great Ormond Street Hospital in London to curve the epileptic seizures. The pioneering operation involved disconnecting the outer layer of the affected right half of her brain, It was a testing time for the family. Surgery left Angelina with a limp on her left side but despite having problems with balance, eyesight and speech, she has made remarkable progress.

A year ago Angelina’s dad Stephen Mills wrote a poem for her that was recorded onto CD by local musician, Warren Polydorou. Mr Polydorou, who has been a backing singer and dancer with Sinitta and Chaka Khan, said: “The poem words were inspiration, and so is Angelina, seeing how she battles every day.”

LYRICS – An excerpt from the song including the verse:
I have this little girl. For me she is the sweetest thing,
She has no idea how much happiness she brings,
Her face is so perfect, she’s so sweet and soft and pure,
She’s beautiful and loving and so very brave and that’s for sure,
She tries her very hardest to please and do what’s right,
She gives the greatest hugs from morning until night.
And when she sees that I feel sad, it opens up her heart,
All she wants to do is hug and play her part,
She’ll squeeze away the sorrow and help me forget about my pain,
She shows me where the sun is when I’m hiding from the rain.
“She is in constant pain, but is always smiling and uplifting. I think ‘if she can do this, I certainly can’. It is easy to drown in your sorrows, but you have to carry on. She gives me so much strength to be positive in life.”

Production costs for the first 100 discs have been covered by sponsorship from local businesses including photography by Andreas Yiasimi, artwork by Glen Carr at Jetprint, cover printing by Chevertons printers Cromer, disc printing and audio duplication sponsored by Audiotree Norwich, and jewel cases Anglian Internet.

About 70pc of all sale and download payments will go to the charity.

The song can be downloaded from www.polydorou.co.uk.

More information about the condition is at www.sturgeweber.org.uk.

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