A world-renowned Rett Syndrome communication specialist visited Aylesbury to meet a little girl with the condition – and revealed that she is teaching herself how to spell.
Susan Norwell is based in the US and works with those who are non-verbal – in particular those with Rett Syndrome.
She flew over to meet five-year-old Esmé Davison-Hoult, who was diagnosed with the condition when she was three years old.
The expert spent three days with Esmé and her family in Wendover after the Davison-Hoults raised the cash through fundraising with Esmé’s Allstars, the charity they set up to help their daughter.
During her visit, she spent time with the youngster both at home and at school and revealed to parents Anthony and Abigail that their daughter can recognise words and is teaching herself to spell, despite no structured teaching.
On the Esmé’s Allstars Facebook page, the family said: “She worked Esmé hard getting some fantastic results. It turns out Esmé recognises words in the written form, is starting to spell out short words and has even more to say than we could have imagined.
“She asked for food, for a drink, told us she gets frustrated and sad, told us what she liked about a book, told us the work Susan was asking her to do was too hard (but carried on and did it anyway!).
“It was as exciting and productive an experience as we could have hoped for and just reinforces what a smart cookie she is.
“We are so grateful for all the support we have had to be able to achieve so much in such a short time but we need to do more. So please help us carry on our efforts and if possible support us with our fundraising.
“Esmé has so much to tell us and we are so excited by the possibilities the future holds for her.”
The condition – which is the result of a genetic mutation and affects around one in every 12,000 girls – can affect sufferers in many different ways.
Esmé, who lives in Wendover with dad Anthony, mum Abigail and brother Patrick, two, spent three days with Susan and Abigail says it was ‘incredible’.
The youngster marked her fifth birthday on Saturday with a fun party with her friends, but her family say it’s always ‘a bittersweet time’.
In a post to the Esmé’s Allstar’s Facebook page, they said: “However, despite the hard times, this year we feel stronger than this time last year.
“We are immeasurably proud of Esmé and the girl that she is growing into. She shows us time and time again how clever she is, how brilliant her sense of humour and social skills are, and we have no doubt she will go on to achieve great things.”
Esmé attends a special school in Aylesbury and her mum says she is doing ‘really well’.
Mrs Davison-Hoult said: “I’m so proud of her for what she can do. She went for a walk at school the other day, and when I picked her up the teacher told me they had been on a walk for nearly a mile.
“That doesn’t seem like much to some people, but for Esmé it’s amazing.”
Esmé has taken up horse riding lessons with Riding For The Disabled in Weston Turville, which mum says she ‘loves’ and it has the added effect of improving her core strength.
As well as juggling family life, the Davison-Hoults are throwing everything into ensuring there is an active programme of fundraising events throughout the year.
The family successfully hit their fundraising target of £15,000 last year which enabled them to purchase a Tobii Eye Gaze computer which Esmé can use both at home and at school to help her communicate.
But Mrs Davison-Hoult says they need to keep fundraising to secure a future for their daughter.
She said: “With the Eye Gaze it was a very distinct thing, we were giving a little girl a voice.
“The next big thing we want to do is to adjust our house. We will need to adapt it for Esmé’s needs by widening the doorways for a wheelchair, and the bathroom and her bedroom will need to be modified too.”
The next one is a curry night at The Raj in Wendover on Tuesday, June 9. Tickets are £20, can be purchased through Facebook here and include starter, main, side and bread, plus the chance to win a Jimmy Choo handbag in the raffle.