Disney superfan, 13, dies on holiday of her dreams after being diagnosed with rare condition

Disney superfan, 13, dies on holiday of her dreams after being diagnosed with rare condition

- in Uk News
124
0

A BRAVE teenager has passed away on the Disney holiday of her dreams after suffering with a rare genetic condition for seven years.

Ellie Pyle, 13, died on September 5 while on a Disney cruise in Norway surrounded by her family who had been planning the trip for two years.

Sarah Smart/Media Wales

Disney superfan, Ellie, with her her mum Sarah Smart[/caption]

Sarah Smart/Media Wales

Ellie was six years old when she was diagnosed with CASK gene mutation[/caption]

The Disney superfan, from Monmouthshire, south Wales, was six years old when she was diagnosed with CASK gene mutation, a condition which affects only around 10 children in the UK.

To celebrate their real-life princess, Ellie’s family made sure their girl’s funeral on Monday was filled with colour, glitter and fairytale characters.

A horse-drawn carriage rode with the funeral procession and Disney princesses walked her in and out of the church, in Brynmawr, south Wales.

Her mum, Sarah Smart, 35, said: “We never did anything half-heartedly and I just think we weren’t going to change that for her funeral.

Ellie was a loving big sister to Marley, nine, and Daisy, three and she was passionate about Disney princesses – she even had photoshoot with Cinderella a week before they went on holiday.

But as a result of her condition Ellie suffered from daily seizures and became unable to walk or talk.

Her mum said: “She was a very determined little girl.

“She had a really rough year health-wise.

“She went to the hospice three times for palliative care but she was really determined to get on holiday which we had booked two years ago.

“I said for months she was going to get on that boat one way or another and she did.”

Sarah added: “Being disabled didn’t stop her from doing things – she has done so many things that even some adults wouldn’t have done.

“She swam with dolphins twice and went to Lapland twice.

“We took her on the rapids once in the park.

“I think she just embraced everything and went with the flow.”

I took Ellie on a Disney cruise years ago and I always promised her I would take her again.


Sarah Smart, Ellie's mum

Her mother said she first started to worry about Ellie when she noticed her head wasn’t growing as it should when she was nine months old.

Sarah said: “She had her first fit at 18 months. The biggest challenge was controlling them – they were daily.

“When Ellie was diagnosed there was only Ellie and one other child at the time.

“This year we went up not far from London and we had a couple of days with all the families.

“There were 10 girls with the condition.

“We went to a disabled camp with heated pools and swings.

“She loved that, she loved the water.”


On September 1, after two years of saving and planning, Ellie and her family embarked on their final great holiday together.

Sarah said: “We went on the Sunday and she passed on the Thursday.

“She was really well up to then, she enjoyed herself… We were meeting all the characters and went to the shows.

“I took Ellie on a Disney cruise years ago and I always promised her I would take her again.”

Sarah Smart/Media Wales

Her heartbroken family helped Ellie live life to the full and travel the world[/caption]

Sarah Smart/Media Wales

Ellie swam with dolphins twice and went to Lapland twice[/caption]

Sarah Smart/Media Wales

Ellie didn’t let her disability stop her from doing things, said her mum[/caption]

 

Sarah Smart/Media Wales

Ellie was a loving sister to Daisy[/caption]

Sarah Smart/Media Wales

The little girl’s funeral on Monday was filled with fairytale characters[/caption]

Sarah Smart/Media Wales

A horse-drawn carriage rode with the funeral procession[/caption]

Sarah Smart/Media Wales

Ellie with her brother Marley, sister Daisy and cousin Corey[/caption]


We pay for your stories! Do you have a story for The Sun Online news team? Email us at [email protected] or call 0207 782 4368 . You can WhatsApp us on 07810 791 502. We pay for videos too. Click here to upload yours.


Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

You may also like

Christmas post chaos feared as Royal Mail staff vote to strike over festive season

POSTIES have voted to bring havoc to Christmas