“Work hard and play hard is my motto”

SHE hasn’t the strength to open a packet of crisps and has never been able to walk but Millie Hawes trekked 80 miles across the Lake District and raised more than £30,000 for charity.

As a law student at Durham University, the 18-year-old is revelling in being away from home and is living life to the max, just as she has alway done.

She was born with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease which means Millie’s back has become gradually weaker over time. When she was about eight years old, doctors worried that her spine would eventually collapse and squash her internal organs so she wore a plastic, tight-fitting spinal jacket for a number of years that was restricting and very uncomfortable.

At 13 Millie had an operation that put rods in her back from the top of her spine to her pelvis – it got rid of the spinal jacket, however she now sits bolt upright all the time and struggles to bend forwards or sideways.

STUDENT: Millie Hawes

STUDENT: Millie Hawes is about to start her second year of a law degree at Durham University

Despite her health struggles, Millie said she isn’t looking for sympathy.

When she was 14 she decided to do an 80-mile trek in her wheelchair across the Lake District as part of the SMA Trust’s MAD Challenge, which took four days and raised a total of £32,000. She regularly speaks at charity dinners to more than 500 people, recently completed her Gold Duke of Edinburgh Award and has volunteered at a hospice for two years.

Academically Millie, from Cheshire, has excelled too and has thrown herself into student life at Durham University. “I’ve always valued my independence and my family have been fantastic, but I was determined to live away from home during university,” she said.

“Mum and dad have been amazing and supported me in moving, I know it was a big step for them to take as well.
“I have a team of seven personal assistants, or carers, at university, all of them are female students, so they blend in with the rest of the campus. That was really important to me – I didn’t want older carers as I wanted to be able to go out until 3am and have people around me that understood that. Plus I have made a fantastic set of friends.”

Millie is supporting Jeans for Genes day this Friday to help raise awareness of the children’s charity Genetic Disorders UK which is encouraging everyone to wear their jeans to work or school in return for a donation to www.jeansforgenesday.org.

There are four variations of SMA, type one is the most common and the most severe, manifesting itself in difficulties moving, eating, swallowing and breathing. Due to the serious respiratory problems, most children with this type of SMA rarely survive their second birthday. Armed with this information and two weeks before Christmas, Millie parents, Sophie and Mike, waited for their todder’s results.

Sophie, said: “Fortunately, Millie was type two, which is less severe, but we were told that Millie would never be able to walk and there was a chance of shortened life expectancy. I’ll never forget that day. My first thoughts were, ridiculously, we would never be able walk down the road together holding hands and she would never be able to go to ballet lessons.
“Well, Millie managed to do both those things, but I was upset because I thought she would never get to do all the normal things you want for your child and there is no cure.”

milllies gang

PALS: Millie Hawes and friends

“I’ve always pushed hard for Millie and we have been incredibly lucky to have been supported by some fantastic health professionals. Millie’s first physio fought extremely hard to get her an electric wheelchair when she was only two-years-old so she could have her independence.”

To help Millie go to university, Sophie and Mike had to approach social services, as they knew Millie would need a thorough, complex care package in place to support her. “The verdict was particularly unnerving, it described Millie as profoundly physically disabled and honestly I have never ever looked at it that way,” Sophie explained.
“That’s the thing about Millie she looks physically much stronger than she is in her wheelchair. If you shake her hand she is incredibly weak and can’t even open a packet of crisps never mind lift anything heavy. Fortunately, she can put on her own make-up, which is an essential skill for any teenage girl,” she said.

In a recent blog post Millie wrote: “Work hard and play hard is the motto I have tried to give myself to get the best out of life. I like to think that I take every opportunity that I can to experience life, just as any other 18-year-old would do.
“I do sometimes wonder what life would be like without my genetic condition – I have three younger siblings who are all carriers of the ‘dodgy’ gene but are not affected, I carry two of those genes. Our family never had any idea that this condition ran in the family and yet one in 40 of us carry this gene and SMA is the largest genetic killer of babies.

“Of course I’m not saying that I wouldn’t jump at the chance to be able to walk, but I have been brought up in a family who has always encouraged me to get involved and have a go. Maybe I’m one of the lucky ones.”

CONTACT: 

To donate to Jeans for Genes Day on Friday, September 18, visit www.jeansforgenesday.org

Genetic Disorders UK website www.geneticdisordersuk.org     Twitter: @GeneticDisUK

Spinal Muscular Atrophy Trust  website www.smatrust.org       email info@smatrust.org              tel 01789-801155

 

 

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