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Local Charity trying to raise money for an adapted bike for local school girl

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holly - The Parents Consortium

Local school girl Holly (14) came to The Parents consortium for work experience as every other company was unable to take her on. They offered her a week in fundraising and got to know her very well.

She is different to many of the children we have here as she is very bright and goes to mainstream school –Leigh Academy in Longfield. She does not have any friends to socialize with and stays at home most of the time.

She is a lovely, charming young lady who needs to have better chances in life. Parents Consortium has got involved and we have taken her our on day trips, sailing and rock climbing. This has boosted her confidence no end. We have also sorted out an EHC plan for her education and the family are really grateful.

Holly said the worst thing about her disability is that she is not mobile and used to enjoy bike riding but needs a special one adapted for her and her mother can not afford it. The bikes are £2000 so The Parents Consortium have set up a crowd funding page for Holly to help raise the amount needed to get Holly mobile. www.justgiving.com/crowdfunding/hollymorant

 

Holly’s Story

Holly is the younger of two children to Claire. She was born in January 2001 and was shortly diagnosed with a condition called Robinow Syndrome. As a baby she underwent corrective surgery to her hips and club feet which her parents thought would help her to lead a healthy and happy life. However, as she developed her parents noticed that Holly was progressively losing her mobility as well as developing cardiac problems. At the age of ten she became a regular wheelchair user then in 2012 her heart condition deteriorated and she had to have an artificial valve fitted.

Around that time Holly’s scoliosis also deteriorated extremely quickly and she lost her lower body mobility. The genetics team went back to the drawing board and Holly was correctly diagnosed with Frank- Ter Haar syndrome, is a very rare disease characterized by abnormalities that affect bone, heart, and eye development. Holly has found the loss of her mobility to be extremely upsetting as she used to be able to do things like riding a bike but she can no longer do this.

Claire was introduced to Parents Consortium by the Leigh Academy as Holly attends main stream school. Holly was seeking work experience at the end of July but quickly found that although Holly is very bright, many companies were unable to accommodate her due to various reasons. So, she joined the team at Allworth Court and helped in the fundraising department processing gift aid claims. We quickly realised that Claire and her daughter had not accessed some of the support that Holly may need to realise her potential in life. We needed to stretch her boundaries and build her confidence so after the work experience we took Holly Sailing, rock climbing and a day out at Arethusa. First of all she was reluctant to join in as she was outside her comfort zone but by the end of each day she was exhausted but claimed that she had great fun. “One of the best days of my life” she said of the sailing trip on the Thames. The work experience has also shown that there is a future for Holly and our Independent Support team are now working with Holly and Mum to ensure she can make the right educational choices with the correct support.

Holly is a smashing young lady and one that is very popular here at Parents Consortium.

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