A brave teenager died on the Disney vacation of her dreams after seven years of fighting a rare gene mutation.
Ellie Pyle, 13, was only six years old when she was diagnosed with CASK gene mutation – an extremely rare condition that affects one of the X chromosomes.
The Disney fan from Nantyglo in Mommouthshire, South Wales, was unable to walk and talk due to her condition and suffered daily attacks.
Ellie died on 5 September during a Disney cruise in Norway, which had spared her family for two years.
Ellie Pyle, 13, died on 5 September during a Disney cruise in Norway that had spared her family for two years (photo: Ellie with her mother Sarah Smart)
Her heartbroken family has now paid homage to Ellie, who overcame countless obstacles to live a full life and travel the world.
Ellie & # 39; s mother Sarah Smart, 35, said: & she was a very determined little girl. She had a very tough health year. She went to the palliative care hospice three times, but she was really determined to go on vacation we had booked two years ago.
& # 39; I said for months that she would get on that boat somehow and she did. & # 39;
Mrs. Smart, who is also the mother of Marley, nine, and Daisy, three, said that her disability did not prevent Ellie from & # 39; traveling the world and living a full life.
Ellie was only six years old when she was diagnosed with CASK gene mutation – an extremely rare condition that affects one of the X chromosomes (photo: Ellie with her brother Marley, sister Daisy and cousin Corey)
She said: “Disabled people have not prevented her from doing things – she has done so many things that even some adults would not have done. She swam with dolphins twice and went to Lapland twice.
& # 39; We took her to the park once. I think she has embraced everything and went with it. & # 39;
For the mother of the three, concern about Ellie's heather only began at nine months of age when she noticed that her first-born's head was not growing regularly.
& # 39; Ellie developed quite normally to nine or ten months when we first noticed that her head wasn't growing as it should & # 39 ;, Smart said.
& # 39; She had her first attack after 18 months. The biggest challenge was to control them – they were daily. When Ellie was diagnosed, there was only Ellie and one other child at the time. & # 39;
Every year, those with the extremely rare condition and their families meet to support each other and relax.
The Disney fan from Nantyglo in Mommouthshire, South Wales, was unable to walk and talk due to her condition and suffered daily attacks (photo: Ellie and Daisy)
Her heartbroken family has now paid tribute to Ellie (photo), who overcame countless obstacles to living life to the full and traveling the world
& # 39; This year we went not far from London and had a few days with all the families. There were 10 girls with the condition, & Mrs. Smart added.
& # 39; We went to a disabled camp with heated pools and swings. She loved that, she loved the water. We would also perish as a family (to Ty Hafan) and make memories there. & # 39;
On September 1, after two years of saving and planning, Ellie and her family embarked on a Disney Cruise from Norway. The precious time spent together on the boat is something that her loved ones will never forget.
Mrs. Smart said: & We went on the Sunday and she passed the Thursday. Until now she was really good, she enjoyed it. She really liked the music and the lights. We met all the characters and went to the shows.
& # 39; All restaurants have animations and we went every night. I took Ellie on a Disney cruise years ago and I always promised her I'd take her again. She went to America, to Florida. & # 39;
On Monday, a horse-drawn carriage and Disney princesses gathered in Brynmawr as part of a special service to say goodbye to Ellie.
For her family it was important that the lives of their own & # 39; princess & # 39; fourth.
Mrs. Smart said: & We have never done anything halfhearted and I just think we would not change that for her funeral. There was a horse and cart and the princesses walked her to church and church.
& # 39; Her order of service was slightly different – it was very pink and colorful. & # 39;
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