Project Description

Evie

Our beautiful daughter Evie Grace was born in 2008. Evie was our third child and seemed very different to both her brothers. Evie was delayed reaching her milestones, although the health visitors would reassure us that all babies develop at different speeds.

It took 6 months of constantly raising concerns before at 22 months Evie was eventually referred for a hearing test and a biomechanics assessment. Thank goodness for the biomechanics appointment, as the specialist was so concerned about Evie’s development that he wrote to the Paediatrics team asking for their opinion on Evie’s development.

Evie first saw the paediatrics team when she was just over 2 and we were told she had global development delay. Evie was then supported by a team from Orthotics, Speech and Language, Physiotherapy and the Pre-school support. Evie was also seen by a geneticist to see if she showed any similarity to any syndromes, which she did not. We were also offered an MRI scan, which we declined as we felt it may give reasons to why Evie is delayed but would not provide a cure and we did not want her to have the necessary general anaesthetic at such a young age.

Evie eventually walked independently with the help of Piedro boots at the age of 2 and a half.  She would still constantly trip and fall as she would run everywhere (apparently it is a lot easier for your child to run than walk). Over the years we have had several trips to A&E and minor injury units for the injuries, but not so often now she is a teenager!

Evie was about 4 before she could say a few words together to form a small sentence.  We found that she would forget words that she had learnt. This has happened on several occasions over the years, things she can do every day, like knowing the code to unlock my iPad she would suddenly forget.

Back in 2011 we participated in the DDD study, then in 2017 just before Evie’s 8th Birthday we had another appointment with the geneticist when we were given the DDX3X diagnosis, which was a real surprise but also some relief that we now had a diagnosis.

Evie attended our local mainstream junior school with her brothers. It was a difficult decision whether to send Evie to our nearest special school 45 mins away or attend with her brothers, but Evie loved every moment of going to school and her school friends were so kind and helped her enormously. In September 2019 Evie started at a special high school and she loves it. At the age of 13 Evie cannot read and does not really enjoy reading books, she struggles with sounding out words and blending. However, she is making progress and can now recognise and write most letters. Her favourite part of the day is going on the school bus that collects Evie from our house and she is normally shouting goodbye loudly to everyone on the bus as she arrives home.

Evie conversations can be very repetitive and she will ask the same question over and over again, as soon as there is an advert for Christmas in October Evie will ask about it every day, up to 50 times a day. However, Evie can amaze us with the things that she can remember usually which she has experienced from years ago and also how she can recognise different models of cars, especially Tesla cars.

Evie enjoys swimming, cycling at ‘Wheels for All’ and going to see her friends at Guides. Evie loves playing with water and bubbles (we go through a lot of liquid hand wash!), being loud, being outside and especially dancing and singing. She is always smiling and laughing, has countless energy and is non-stop throughout the day. Life is definitely a journey, bumpy, where you often have to fight and be the voice for your child, but every little step is an achievement and we couldn’t be more proud of Evie.

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