Ella

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Ella was born in May 2009, three weeks earlier than expected with a high 'palate' but no one had any significant concerns at that time. By the time Ella was 17 months old, we were still not much further along in understanding why Ella was not walking, had floppy limbs and was unable to hold with a firm grip. Ella went to the children's hospital for tests, including a genetic screening and a brain MRI scan. We were then informed that Ella has a diagnosis of Mosaic Down Syndrome (MDS).

After hearing this news, we left the consultation with the doctor in a very low mood, with no idea of how to proceed and help our daughter. We didn’t know where to go, and we found that all the MDS organisations are in America. Thankfully, we came across one other UK family on the internet, who also have a daughter with MDS. Soon after Ella's diagnosis, she received four months of physiotherapy. She began to walk at around 27 months. She had many hospital tests to check for any health problems more likely to occur with this genetic disorder. Then, after a long process of paperwork and many meetings, we were able to obtain an education and healthcare plan for Ella from the local authority. Ella had speech and language input; she began to wear glasses when she was three; she wore special boots to support her feet and legs, but later when she became stronger she switched to special insoles in her shoes to help with walking, and she continues to wear these.

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Ella has gone to mainstream nursery, infant and now junior school. She has had the full school experience, but we have found that due to her low muscle tone, she gets very tired over the course of a week and so she has had Thursdays off for home schooling when she has a rest but also catches up on key skills with me, her mum. There have been times when others have rejected her, maybe because they don’t fully understand her. There have been times when we get disheartened because she cannot keep up with the other children, who are not held back as much by their genes. Ella is now aged nine, and she is a lively character, full of energy. She is very sociable and enjoys dancing, swimming and musical theatre. Her proudest achievement is receiving a modelling contract with Zebedee Management in April 2018. She has been to various castings and has had three professional photo shoots.

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For any new parents, I would advise patience, perseverance, and to talk to others, seeking out help and support wherever it may be. I would say to parents beginning a journey such as ours: keep believing in your child and keep working towards the best possible life for them. Your child is an incredible miracle and you never know what they can accomplish or achieve in life.

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