The question I would really like your help to answer is: “How can I help Esmé?” You see I live one mile away from a very beautiful and special little 4yr old girl called Esmé Davison-Hoult in Buckinghamshire. Frozen is her favourite film and she loves dressing up as Tinkerbell and playing in the garden with her friends, cats, dogs, chickens, and little brother Patrick. In many ways, Esmé is like most other four year old girls, but in other ways, her life is very different. I’m a single parent to my daughter Millisent 7yrs and son Gabriele 2.5yrs and we live in the same sleepy little village, with Esmé being between my children’s two ages. As I kiss my daughter goodbye stood proudly at the school gates of year two I walk our chihuahua home with my son for an afternoon of playing, baking and having fun before he shortly starts at the local pre-school at the end of this year.
I had quite a troublesome pregnancy with my son Gabriele, I’d miscarried a few months before having him and so I bled throughout the 39wks, he fell silent in my womb on a handful of occasions and had to have plastic surgery shortly after he was born to correct an excess growth. But thank God he is a perfectly normal little two and a half year old now, and together with my wonderful daughter and I, we are the three musketeers, loving, supporting and helping one another as every family does.
Esmé’s development was as expected until she was about two and a half years old, when quite suddenly she started to lose skills she had already learnt; she stopped talking as much and seemed less able to use her hands or to follow simple instructions. What Esmé’s parents didn’t know was that she had entered the regressive phase of a rare neurological disorder. It wasn’t until autumn 2013 that doctors broke the devastating news of her condition.
The reason that I’m sharing this with you, is because as a mother I know exactly how it feels to worry about a child. From the very first moment you discover you are pregnant, to the anomaly scan, finding out the sex, giving birth, winding, feeding and watching them sleep at night just to make sure they are still breathing. Children are a miracle, a beautiful and precious gift that nothing else in the world can ever compare to. And we will never stop worrying about them for as long as we live.
But one thing that my heart will ever truly understand is the concept of raising a child with a life-changing condition. You see, little Esmé has Rett Syndrome. Rett syndrome is a severe and lifelong disorder that is caused by a random genetic mutation. It affects approximately 1 in 12,000 baby girls each year, making it as prevalent as Cystic Fibrosis, yet much less well known. As with Esmé, girls with Rett develop like any other baby in the early weeks, months or years of their lives. The condition does not become apparent until they enter the regressive phase which is normally when they are between six months and two years. Many girls lose their ability to walk and talk, and they develop other symptoms such as seizures, breathing problems, difficulty eating, tremors and heart complications. There is currently no cure for Rett syndrome and there is no treatment for any of the symptoms either.
Esmé’s parents Anthony and Abigail first contacted me on the 03/06/14, I’d never met them before, but through word of mouth they’d heard that I support local businesses and charities and asked me if I would help to get the word out about Esmé’s condition. At the time I was busy training and fundraising for a charity bike ride for Wheelpower to support disabled children and adults, so I shared Esmé’s facebook page across my social media and asked my friends and followers to help me to spread the word.
Due to the disruption of neural pathways in her brain, Esmé now struggles to use her hands in a purposeful manner, which means she has to be bathed, dressed and fed by an adult. Her breathing is disrupted and irregular, leading to periods of hyperventilation and breath-holding, which places great strain on her heart. And Esmé can no longer talk, even though she comprehends everything. Due to the lack of purposeful hand use, she cannot sign, write, indicate using her hands, or communicate in any of the other typical ways. Imagine not being able to say what you would like for breakfast, tell your family that you love them, or join in conversations with friends. This is the reality for Esmé. Her brain is functioning but she is locked in her own body. Ultimately, the only muscles in Esmé’s body that she will have control over will be her eyes.
Whilst there is no treatment or cure for Rett Syndrome and this cruel condition will take Esmé from her family bit by bit, it HAS been reversed in mice. It is not a degenerative disease. It has been shown that if the missing protein can be replaced then the loss of skills can be undone. Scientists are working hard to find a solution to make Rett Syndrome the first neurological disorder to be treatable. I pray that this will happen in Esmé’s lifetime because no little girl deserves a life with Rett.
In September I proudly walked my daughter Millisent into her first day starting year two of school, she was both nervous and excited, standing sweetly in her shiny new shoes and crisp new uniform before kissing her brother and I goodbye at the school gates. It’s a nerve wracking time for every parent and child, and you worry the whole day if they’re ok, if they’re making friends, settling in and happy. When I collected her after school she ran into my arms with the biggest smile on her face and talked a million miles an hour the entire walk home about all of the fun things she did all day, the people she met the things she saw and her new routines. It touched my heart at the very same moment that reading Esmé’s fathers words broke my heart.
On September 8th 2014 Anthony wrote on Facebook:
“Today is one of those days which doesn’t look like it’s going to be a problem leading up to it but when it arrives “Whammo”!! We’ve watched and struggled so very hard with all those lovely beautiful pictures of all of Esmés friends of 4 years all grown up heading for theirs schools. Trying to smile but inside fighting back tears as you know Esme and her friends are now heading down different educational paths. Inside she could be screaming No Mummy No Daddy I want to go with James, Issy, Carys, or any of the 100s of friends of other friends. But we can’t hear her! So we delivered our little speechless princess into the welcoming arms of Booker Park School in Stoke Mandeville to walk that lonely path of Rett Girls education. We need to get her her Eyegaze so one day she can come home and tell me and Abigail “Mummy Daddy I had a great day at school”
How painful it must be for Abigail and Anthony to watch their precious child living with Rett Syndrome. The smallest things in life that we all take for granted, the morning smile, bear-hug, reassuring words, acknowledgement and cheerful conversations. From asking what they’d like for dinner to taking a walk to the corner shop for sweets.
On September 10th Abigail wrote on Facebook:
“So today Esmé had her first session using the school eye gaze device. It went so well that they couldn’t believe she had never used one before, or even seen one. This confirms what we’ve been saying that she’s so smart with so much to say and makes it even more important that we raise enough money to buy her one of her own.”
Esmé is a happy and determined little girl who clearly has so much she would like to say. She has strong eye gaze and visual tracking abilities, making her an ideal candidate for eye gaze technology. This ground-breaking communication tool has been used highly successfully to teach girls with Rett to read, learn and communicate with others. Statutory funding is not available for the equipment and training Esmé needs, but her parents are determined to give their daughter back her voice. Time is of the essence. The sooner Esmé is trained to use eye gaze technology, the better the results will be. The Tobii Eyegaze costs £15,000 with a further £10,000 needed for the training and additional software as she gets more advanced. So earlier this year, the Esmé’s Allstars Fund was established to support Esmé’s needs both now and in the future, as well as to fund medical research into Rett syndrome. The first priority is to raise £25,000 to buy eye gaze equipment and training for Esmé. Thanks to amazing support from a community of individuals and businesses that have been touched by Esmé’s story, £10,000 has been raised to date with the aim of reaching the final £15,000 target by the end of the year but to do this, Esmé needs your help.
Fast forward four months and I have been reposting fundraising bulletins and events for Esmé, having just received a message from Anthony via Twitter asking if I would like to auction a signed bikini from Myleen Klass and Littlewoods. I am honoured to be able to help little Esmé in any way that I can, and as I was a glamour model before having my children, and a lingerie model now, I guess this is why Anthony and Abigail thought of me to auction this piece. But this is where I need your help, because I’d like to raise as much money as possible for Esmé. If you have any thoughts or ideas on how best to go about it please get in touch and leave your comments below. Please share this post with your friends and family and help to support Esmé and other children with Retts Syndrome.
If you’re a business and can think of a fundraising event that you would like the bikini or I to take part in for Esmé then please get in touch. And if you can think of any celebrities or local community members who may be well connected or able to get the word out and about please repost and encourage them to share this. Together we can make a difference.
UPDATE: 08/11/14 Train Like A Pro Charity Raffle
I took the signed Myleene Klass bikini along to a white collar boxing match last night, Train Like A Pro, and sold raffle tickets on the door for £1.00 each. I am incredibly pleased to have raised £342.00 for Esme and took it to her this afternoon. As well as selling the raffle tickets I also handed out information sheets about the charity and green Esme’s Allstars wristbands to remind and encourage others to support this wonderful little girl. Thank you to all who purchased raffle tickets and made a difference, together we can change lives and I’m sure that the donation will be put to great use.