Raising cash to battle rare condition

By Harriet Ernstsons Friday 28 February 2014 Updated: 28/02 09:22

A TODDLER born with a rare syndrome is set to benefit from a fund-raiser held at the town’s football club.

Charlotte Stephens has organised a quiz and disco at Redditch United’s Valley Stadium ground to help towards some of the costs of her niece Isabelle Duffy’s medical treatment.

The 7.30pm event takes place tomorrow (Saturday) and includes a raffle with prizes such as a month’s free gym membership, beauty treatments and a digital camera.

Charlotte, from Crabbs Cross, will be sending the proceeds to Australia where her brother Ross relocated shortly before his daughter was born prematurely after she stopped growing in the womb.

Isabelle, who will be two in May, was diagnosed with the condition PTLS which is so uncommon it is not yet known what the long-term effects on her health will be, although she could have autism or learning disabilities.

She is not able to communicate with her parents, is very small for her age, has a feeding tube and relies on oxygen while she sleeps - which the family have to pay for alongside her supplements.

Charlotte told the Standard: “The syndrome is really rare and hasn’t actually been discovered for that long. She has an extra chromosome but we are not sure what she will have as things can develop.

“Because they are so far away I haven’t been able to go and meet her so I wanted to send some money over. She is really into bubbles at the moment so I am hoping to get a sensory bubble tube for her room and anything else she needs to help with her treatment.”

For tickets costing £8 each including hot food, e-mail chalkystephens@gmail.com or call 07580 039812.

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