Local Face: Esmé Davison-Hoult

  |  Published: Jun 1st 2015

Born in May 2010 at Stoke Mandeville Hospital, Esmé lived in Weston Turville until August 2011 when she and her parents, Abigail and Anthony, moved to Wendover. A bright, happy and engaging little girl, everything seemed normal, other than being late to walk. In February 2013, baby brother Patrick arrived.

Soon after, however, it became obvious that Esmé’s development was not typical. She lost skills such as the power of speech and the use of her hands. Her breathing became erratic and she suffered from screaming episodes and chronic digestive problems. This extremely stressful time culminated in a diagnosis of Rett Syndrome: a devastating blow to Abigail and Anthony and those closest to them.

Rett Syndrome is a rare neurological condition caused by a genetic mutation. It occurs randomly and is generally not inherited. It affects 1 in 12,000 live births, predominantly girls. It is a spectrum disorder: each girl is affected to a different extent. Typical symptoms are the loss of speech, loss of purposeful hand use, breathing irregularities and digestive issues. Most girls never walk, or lose the ability to do so. The majority of sufferers experience seizures and most have scoliosis. Many become withdrawn and anxious. Most girls lose the ability to chew and swallow, requiring a feeding tube. There is no treatment, and at present, no cure. Nobody can predict which of the many symptoms Esmé will experience, or how severe they will be or even when onset will be. It really is a case of living in the moment. 

It is not all doom and gloom however. Esmé is a happy 5 year old. She is still able to walk well. She does not suffer from any form of seizures at present and her spine is straight. She can eat and drink as normal albeit with help as she cannot use her hands. So far, Esmé is living a full and interesting life.

She attended Little Acorns Kindergarten for her preschool years. She had a wonderful time and her parents have huge praise for the attitude of staff when her diagnosis was made and the months afterwards. Esmé is now at full time school which she thoroughly enjoys. She loves swimming, the theatre and cinema, the outdoors, parties and books. Rapunzel, Cinderella and Tinkerbell are her heroines. She has many friends and is extremely sociable. She loves music, especially AC/DC, and she likes chocolate a lot.

Abigail and Anthony set up Esmé’s Allstars in February 2014 raising both awareness of Rett Syndrome and funds for crucial equipment and services to enhance Esmé’s quality of life. Last year they successfully raised £15,000 to buy an eyegaze computer allowing Esmé to communicate: by looking at letters and symbols on the screen she can “talk”. It shows that she is learning to read and spell. She is able to communicate her opinions and preferences. When she isn’t well she can tell her parents what it is that hurts. She tells her teachers “you’re mean” when they make her work hard and says “bummer” when it’s time to end an activity. Before her birthday, she navigated to the Birthday section of the eyegaze software to tell her teacher: “I birthday, I party, I candles”. All the tests, medical and otherwise, have shown that Esmé’s learning and understanding capacity are age appropriate.

Fundraising has been phenomenal as has the support of friends and the local community. Find out about future events and how money is spent at www.facebook.com/esmesallstars. To find out more about Rett Syndrome and the very real possibility of a cure, visit www.reverserett.org.uk.

Esmé and her family are a big part of Wendover life and would like to say a huge thank you to all who have supported them, and who continue to offer support in whichever capacity it may be.

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