Murrin Widley is 16 years old and, mum Deborah says with affection, “a twisted little rock chick.” She loves You’ve Been Framed and Green Day. She’s doesn’t do pink and she is superhero daft. She’s got Iron Man on the back of her wheelchair and Superman on the wheels themselves.

She needs the wheelchair because Murrin has spina bifida, hydrocephalus, scoliosis, and chiari malformation type two. As a result, she has no short-term memory, requires a catheter and lives in constant state of pain. And yet she is always smiling.

Her mother hasn’t been doing a lot of that in recent years. Not since Murrin started going to high school. For the last four years Murrin, from Glenfarg in Fife, has been struggling due to a lack of required assistance. At primary school she had one-to-one support. That is no longer the case.

At high school support assistants are only allotted to take Murrin from A to B in the school building. She has no support assistants in the classroom which is essential because of her special needs. She is often left alone in rooms on her own and there are times when there is no one available to help her with her catheterisation. Physio appointments, which are built into Murrin’s schedule, have been regularly missed. On other occasions she has been taken out of art class – one of her favourites – for physio when she’s not scheduled to attend.

On top of all this the school doors are simply not wide enough to allow Murrin’s wheelchair entry in the first place.

Perhaps unsurprisingly, then Murrin has become withdrawn and lost confidence.

But there is some hope on the horizon. Thanks to funding from the Edinburgh and Lothian Health Foundation, Spina Bifida Hydrocephalus Scotland (SBH Scotland) has launched a Health and Wellbeing service specialising in the care of young people aged between 12 and 25 years old who face the daunting move to adult services.

The project is one year old and Murrin is one of the young people who are beginning to benefit from SBH Scotland’s initative. When the project was launched her family was contacted by Lindsay, SBH Scotland's health and wellbeing nurse to offer support. It has been transformative.

“Lindsay has taken the time to get to know Murrin and since then she’s been an advocate for her,” explains Deborah Widley. “The stress made me so ill. We were left fighting the system. But having an outside voice coming in makes a difference.

“She can see the whole picture. Her knowledge and honesty have been invaluable in explaining in realistic terms the demands of Murrin’s condition and the actual support that is truly required. As parents going in we’re often ignored.”

As a result, a weight has been lifted off the family’s shoulders. “Now that we have Lindsay, we are suddenly not fighting battles alone,” says Mrs Widley.

The Health and Wellbeing Service is exactly the sort of project Herald readers will be supporting if they back the charity through our Christmas appeal.

As well as speaking up for Murrin’s needs at her school, Lindsay has been liaising with school and college staff in an attempt to find suitable link courses for Murrin at college with an aim to develop the teenager’s independent living and life skills.

Lindsay is also hoping to organise a voluntary placement for Murrin at a local centre for rescue dogs. It’s an attempt to offset the disappointment Murrin felt after failing to win a place on an animal care course when she wasn’t given adequate notice by her school of an interview for the course. That failure removed whatever confidence Murrin had, her mother says. “For someone with hydrocephalus there has to be some preparation and planning in advance of such a big thing,” she explained. “This is just another example of the school setting Murrin up to fail.”

With Lindsay’s help it is hoped that Murrin’s confidence and coping skills will improve. As for her taste in music, though … Well, she’s no intention of changing that at all.

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