Mum's heartbreaking plea for daughter with 'the biggest smile'

Sam Macpherson, pictured with her daughter Alivia-Rose who she is trying to get a sensory garden for

Sam MacPherson, pictured with her daughter Alivia-Rose who she is trying to get a sensory garden for. Picture: Danielle Booden - Credit: Danielle Booden

A mum has pleaded with people to help her build a sensory garden for her daughter to enjoy in the limited time she has left.

Sam MacPherson said all she wanted was to make Alivia-Rose happy by creating some outdoor space for the five-year-old to immerse herself in - and make memories for the family as a whole.

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden - Credit: Danielle Booden

Alivia-Rose is one of only 300 people in the world to suffer from life-limiting Trisomy 9 Mosaicism,  where the entire ninth chromosome appears three times (trisomy) rather than twice in some cells of the body. 

It means she is non-mobile and has limited hearing and vision - but she loves being outside and the various sensations that gardens deliver.

But because of the coronavirus pandemic, charities that might be in a position to grant her a wish were not taking on new cases and there was a backlog of treats and trips to deliver, Mrs MacPherson said.


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"A trip to Disney would be no good for Alivia-Rose," the 45-year-old said. "She just loves being outside but for me to be able to do it would cost a fortune and I wouldn't know where to start.

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden - Credit: Danielle Booden

"It would be really nice if Charlie Dimmock could come along or DIY SOS.

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"It is all grass at the moment but there needs to be a smooth path with raised flower beds.

"We do not know how much time we have with her.

"She has so many problems going on, but she has the biggest smile."

Mrs MacPherson, who has three other children - Lily, 17, Poppy, 14, and Harry, 10, added: "It has been hard for all of them. I just want to get something for her that will make her life happier and more fun, but safely.

"If there is a building company or a landscaping company or a charity that anyone knows of that could help then please let us know. This is so important for us."

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden

Alivia-Rose who is one of 300 in the world to suffer with a rare disorder. Picture: Danielle Booden - Credit: Danielle Booden

Alivia-Rose's condition was diagnosed when her mother was 20 weeks pregnant, the main red flag being her heart was in the wrong place.

She needs 24-hour care and to be watched every second in case her tracheostomy tube blocks or she starts fitting.

She attends Clare School in Norwich and has respite care at The Nook every other month.

Anyone who can help is asked to email sam.mac810@gmail.com


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