Elisia's Story

Elisia is 9 years old and has a partial deletion at the beginning of her MEF2C gene. This gene is located on the 5th chromosome. It is an ultra-rare chromosome disorder. There are only around 300 people globally with the condition, of which just 28 are in the UK. This is a profound and Multiple Learning Disability (PMLD). The MEF2C gene is responsible for the development and maturation of muscle and brain cells, immune cells, and cells that form blood vessels. Symptoms are primarily neurological. However, due to the MEF2C gene being a commanding one, it means Elisia’s brain does not always send the correct, or any, commands to her body which often means when Elisia is mastering a new milestone it can be very tricky and take a long time. 

Elisia is a wheelchair user; she also has some medical complications due to her condition and is non-verbal. Despite this, Elisia is very determined and can weight bare quite well. Her standing and walking is progressing, slowly but well. Elisia uses a walker or holds onto an adult to take steps but tires very quickly. Walking unaided is now our big focus in 2024 but we celebrate every small achievement with Elisia. 

Elisia is a beautiful, loving and charismatic child. She loves any type of water and is in her element when splashing away. Elisia loves bopping to music and her favourite film is Trolls World Tour. She recently started making decisions by choosing between two pictures with her eyes or hands but still needs a lot of encouragement to do so. She is a little thrill seeker and absolutely loves being on a rollercoaster where she gives us her biggest smiles. We just wish we could take her more. We are currently saving to try and get her another theme park annual pass as when we had this previously, she was so happy and smiley all the time of being there and has even started recognising the parks and connecting that they mean rides which earns us big smiles and giggles before we’ve even entered. 

Our biggest challenge is caring for Elisia and keeping her safe whilst also looking after her younger brother, Matthew, and looking after the house. Sometimes it is challenging to find activities that both my children enjoy and are accessible. I also find it a difficult to spend time with Matthew and cater for his needs, as Elisia needs so much support and attention a lot of the time. We have recently discovered support for young carers, for the age Matthew is, which we think is important to do for Matthew as his life is very different from his peers but he takes it in his stride and is an amazing little brother. He is one of Elisia’s biggest cheerleaders and is always so proud of her and her achievements, always wanting to support and assist her where he can. Matthew is so kind, caring and patient with Elisia and we hope we can give him more opportunities in the future.

We found The Knights Foundation in 2023 and are so glad we did. Elisia had an amazing experience with iFly all funded by The Knights Foundation. This met her sensory needs so well and the fact that she cannot walk was irrelevant in the air. On the night, another child got very anxious and we were asked if Matthew would also like to fly which he jumped at the chance so it was lovely to give him this opportunity as well. We were so grateful for this experience because it was an activity we had never anticipated Elisia would be able to do due to her access requirements but the staff at both iFly and The Knights Foundation were all so kind and helpful that it was truly an amazing evening that we will remember and cherish for years to come. 

In May this year, we had a funded break in the Knight lodge. This was fully accessible for Elisia with ramps and a wetroom. It was a beautiful lodge on the edge of The New Forest with a great onsite pool and close to many different beaches. We had a fantastic stay and made some lovely memories as a whole family whilst also being able to meet Elisia’s needs easily. 

We are looking forward to a day at Marwell with The Knights Foundation in the summer holidays. We love going there as a family and it is amazing that they do days like this for us, especially somewhere we can all enjoy. 

We are so grateful for the support and experiences The Knights Foundation have given us as a family. There are so many opportunities for Elisia that we would never have dreamed of her being able to do. We are so thankful for the support we have received and how kind and helpful everyone has been. We can’t wait to see what else the future holds and what new activities Elisia can get involved in!