Thanks so much to all who contributed in 2017 to buying the Eye Gaze for Ella Bloxsidge. Thanks to your contributions, Ella has now started to communicate some of her thoughts, wishes and needs using this Eye Gaze (eye controlled speech-generating device). This has been a huge step forward for Ella and her family.

For those who don't know her, Ella is a beautiful, funny, and loving 13 year old. Ella was born with Rett Syndrome, a life shortening incurable neurological disorder, caused by random gene mutations.

Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy, and Anxiety Disorder… all in one little girl. Ella is unable to speak or use her hands. She cannot sit down, or stand up on her own or walk far without help. She has epileptic seizures and scoliosis.

However, using the Eye Gaze is showing that Ella understands her environment, and what is said to her. The way she continues to extend her use of the Eye Gaze shows that she has the ability and motivation to learn and improve her communication skills.

The authorities placed Ella in a school which is not geared up to supporting children like her, who have profound and multiple learning disabilities, probably due to funding constraints. Ella's current school are focussing on Ella’s basic care needs, and are keeping her safe - but they are communicating very little with Ella using eye gaze technology, and not really helping her to progress either physically or mentally.

Ella’s parents are now going through the courts to fight for Ella to get a place at Treloar’s School. Treloar’s School is a dedicated facility, with many other children with needs like Ella’s, and in particular, a significant number of children using the same Eye Gaze technology. This legal action will cost about £30,000, money that they will not get back, even if they win. Niki and Gaz are taking this money from their savings, which were set aside to have their bungalow redeveloped so that it supports the needs of Ella and her family.

According to UNICEF, every child has the right to an education. In preparation for the court case, Niki and Gaz have employed a group of independent experts (physiotherapist, educational psychologist, speech and language therapist and an independent social worker) who have visited Ella’s current school to assess her and how well the current school are supporting her. These experts have been unanimous in confirming what Ella’s parents already felt – that the current school do not understand her cognitive ability, and that they are unable to meet Ella's educational needs.

Juggling daily life was already very tough for Ella’s family, before this court case – although they are always positive, and interested in the well-being of others. Ella’s parents both have professional jobs. When Ella is not at school, her parents are having to look after her basic needs day and night. This involves lifting and carrying Ella, which is challenging now that she is 13. It also involves monitoring her for epileptic seizures, which usually happen at night. Despite their best efforts, their other 2 children, Hannah (11) and Jamie (9) often take second place.

Ella’s parents say that caring for Ella’s needs is not the problem. The big challenge is in juggling all of their other priorities with keeping on top of the required paperwork demanded by the authorities, and constantly battling to get the support they need. For example, Niki and Gaz recently battled against closure of the local respite centre that Ella used one weekend a month. Sadly, the closure went ahead, and they then had to battle for several months to get the same level of respite at another respite centre. These battles leave Niki and Gaz exhausted and now they are facing an appeal tribunal simply to get the education and therapies that Ella needs.

Please help Ella and her family if you can, through this difficult time. Thank you so much.