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We can't change the fact that she will live a short life, but we can make it as amazing as it can possibly be."

We can't change the fact that she will live a short life, but we can make it as amazing as it can possibly be."

Published by Carol Musgrave at 6:00am 23rd June 2019. (Updated at 12:22pm 23rd June 2019)

A little Guildford girl who is terminally ill and nearing the end of her life - has been helped by strangers around the world with the donation of a new bed.

Five years ago, at age 3, Isabel was diagnosed with a rare degenerative inherited brain disease - Late Infantile Batten disease, likened by her mother Sophie to a form of childhood dementia.

She rapidly started losing skills, and now, age 8, cannot see, walk, talk or eat.

Children with the disease are not expected to live into their teenage years. 

Sophie tells us some of their heartbreaking story:

"When people meet Isabel now they don't see that little girl who was such a whirlwind.

"Now she is so acutely unwell all the time, she suffers from frequent chest infections, she struggles to breath most days and she is completely immobile."

Isabel receives 24 hour care at home, and up until earlier this month was in a bed that was too small for her and not suited to her needs. 

The charity 52 Lives heard about her plight, and in just one week raised £3500 for a new bed by sharing her story with their supporters all over the world.

52 Lives, which was launched by a mother of three, aims to change someone's life every week of the year through small collective, random acts of kindness, and is supported by 100,000 people. 
 
Isabel was nominated by her care team, who said a new bed would really improve her quality of life.

It was delivered on June 12th.

Isabel terminally ill

Sophie said it has made such a difference:

"Isabel was actually laughing and smiling as the delivery men built her new bed.

"I think she knew exactly what it all meant. We honestly couldn't be happier with it! Isabel spends the majority of her day in bed so ensuring she is comfortable is more important than anything else right now.

"We've come to understand the importance of quality of life. 

"We can't change the fact that she will live a short life, but we can make it as amazing as it can possibly be."

Isabel terminally ill

As well as the bed for Isabel, 52 Lives supporters also paid for Sophie and Isabel's father to go out for dinner, and made Isabel a homemade quilt.

Jaime Thurston, CEO and Founder of 52 Lives, said: 

"The whole aim of 52 Lives is to change someone's life every week and inspire people to be kinder. 

"We were thrilled to be able to help Isabel, and are so grateful to all of our supporters who made donations to help make this happen.

"52 Lives gives people tangible help, but what we do is about so much more than just giving people 'things'. It's letting people know that they aren't alone."

 

 

 

 

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