The parents of Hayley Okines who died last week are “overwhelmed with all the love and support” they have received.
Hayley, 17, was an inspiration for the way she faced the rare disorder Progeria which caused her to age prematurely.
Her courage and smile won fans all over the world as the way she dealt with personal challenges was documented on television and in many interviews.
She was diagnosed at just two years old.
Hayley was taking part in a pioneering drug regime with the Progeria Research Foundation in Boston and her role in this will benefit other Progeria children in years to come.
Her death was announced by mum Kerry on social media on Thursday night when she posted: “My baby has gone somewhere better. She took her last breath in my arms at 9.39pm.”
Dad Mark was also by her side.
Having been unwell and tired in mid-March to the extent of missing college, which she loved, Hayley was admitted to the Conquest.
She was then treated for pneumonia and needed two blood transfusions as well as a platelet transfusion but seemed to be making a recovery and was “desperate” to be back home.
She was allowed “a flying visit” to Meadow Crescent on April 2 in the afternoon when she sat smiling on the sofa with brother Louis and sister Ruby there as well as enjoying beloved dogs Angel, Mollie and Dollie.
Kerry had smuggled Hayley’s two chihuahuas into hospital days earlier to give her a treat and hid them inside her jumper to get past nurses on duty.
“Just to see her face light up was lovely,” said Kerry. “We were only there for 20 minutes, with my mum keeping watch on the door, but it lifted her spirits.”
On returning to hospital it became apparent by Thursday evening Hayley was deteriorating and she slipped away as Mark and Kerry kept a bedside vigil.
Mark feels it was as if Hayley had come home “to say goodbye to everybody” and paid tribute to his little girl saying: “She was exceptional to everyone. She brought the best out in everyone she met. She was so loved. In a way we have been preparing for this for 15 years but it does not make it any easier.”
Kerry added: “I am scared that I will forget what she smells like, what her touch feels like, the sound of her voice. I just want her to be remembered by everybody, knowing that she has helped so many people.”
One of Hayley’s last achievements was to write her auto-biography - Young At Heart was published in March and available from Amazon.
Hayley’s funeral will be held on Wednesday April 15 at All Saints church in Sidley and is open to all with arrival from 12.15pm.
There will then be a private ceremony at Hastings Crematorium for family and invited friends only.
From 4pm there will be a wake at the Kings Arms in Ninfield which was Hayley’s favourite place - she was a fan of a pile of mash in which she would make a well and pour her gravy inside.
This celebration of Hayley is open to all, and there will also be a party afterwards at the Devonshire in Bexhill town centre from early evening onwards.
Those who wish can make donations to Progeria Research UK or to the Hayley Okines Wishes Fund set up on GoFundMe by Amy Frost aiming to raise £3,000 so that Hayley’s ashes can be made into a diamond for Kerry - something Hayley herself dearly hoped to happen.