May 22 2013 Latest news:
Monday, December 24, 2012
It began as a poignant poem by a dad about his inspirational disabled daughter - and has turned into a song which is raising money for a charity helping other families like them.
Little Angelina Mills’ four years of life have been a constant battle after she was diagnosed with the rare neuological condition Sturge-Weber Syndrome as a baby.
It has left her with epilepsy, bodily weakness, learning delay. a port wine stain on her face,
In June 2010 she underwent a pioneering seven-hour operation at Great Ormond Street Hospital in London disconnecting the outer layer of the affected right half of her brain, to cut the number of seizures by 80pc, but leaving her with a left side which her parents said was “like jelly”.
Dad Stephen has watched the tot cope with the condition, post operative infections, physiotherapy and discomfort.
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.”
Stephen wrote his poem More Than Just My Little Girl about Angelina a year ago.
But when musician friend Warren Polydorou was around the family house in Gresham near Cromer he began to put it to music, including a chorus which includes the lines: “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.”
The resultant song is now for sale, and raising funds for the Sturge-Weber UK charity, who provides support to families coping with the condition.
Mum Lisa Massingham is one of just five trustees of the charity, whose ambassadorial work saw her also become an Olympic torch bearer this summer. She said the song would help to raise funds and the profile of the cause, and had helped the family express its feelings.
“Stephen is quite a deep person, and neither of us rally discuss our emotions because it can trigger the other’s pain. So he put his feelings down on paper,” she added.
Angelina, who was having up to 30 seizures a day at the worst point as well as hidden ones daily, has had a few in recent weeks, which Lisa says could be down the removal of anti convulsion drugs Angelina had been taking since she was 18 weeks old.
The youngster is also due to return to hospital on January 8 for more laser treatment on her port wine stain.
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.”
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.