‘We won’t allow Elsie’s life to be full of sadness and regrets’

Charlotte and Chris Novell with Elsie Novell
Charlotte and Chris Novell with Elsie Novell

There we were, looking into the smiling eyes of our blissfully unaware little girl as doctors delivered the news that was far worse than we ever could have imagined.

She had no idea why we were so distraught, as we reeled from the diagnosis as she looked on.

Elsie Novell

Elsie Novell

And yet my new little family was facing up to the prospect of our baby girl growing so disabled that we wouldn’t even recognise her...

Those are the words of Sutton mum Charlotte Novell, whose daughter Elsie has Spinal Muscular Atrophy.

SMA (type 2) is a rare, genetic, degenerative muscle condition, which affects the lower motor neurones.

This means Elsie cannot crawl or walk, her arms, hands and neck muscles are considerably weaker than a typical baby of her age and eventually her breathing and eating will become increasingly difficult. There is no cure.

Elsie Novell'This was taken this morning and is Elsie having her first driving lesson in the whizzy bug she's hoping to get later this year

Elsie Novell'This was taken this morning and is Elsie having her first driving lesson in the whizzy bug she's hoping to get later this year

Only now are the Novells beginning to fully understand why their daughter is different to other children, but the journey to here and now was a difficult one.

Charlotte said: “For the first 10 months of her life, Elsie was just like every other baby.

“She held her head up, sat up, stood, started to walk and then crawl. However, Elsie was different in that her progress started to regress following a virus.

“She could no longer bear weight through her legs and her crawling was very slow and pained. Despite taking her to the GP at 11 months old, it took until March to see a paediatrician.”

That specialist diagnosed Elsie on the spot.

Charlotte said: “Lazy. We were initially told our baby was lazy.”

Charlotte and husband Chris returned to their Berristow Grange home with hope restored. If Elsie was merely a “lazy” baby, they could live with that and motivate her out of it.

But as the days and weeks went by, the debutante parents knew that, irrespective of people telling them they were being ‘over-cautious’ because they were going through parenthood for the first time, something was wrong.

They decided to seek private help, paying for a physiotherapist to attend their home to assess Elsie.

Charlotte recalls the different pathway events then took to the contrasting ‘lazy’ diagnosis.

“She quickly identified there was a problem and said she would not be happy working on Elsie’s movement until she had undergone blood tests and an MRI scan.

“We had to really push for these and were initially told ‘we would not find anything’ and we were just being paranoid.

“As all of Elsie’s tests started to come back negative, we were hopeful the doctors were right. Unfortunately, this was not the case.

“On attending an EMG – electromyogram – test at Queen’s Medical Centre, the doctor asked me if anything had been mentioned to me about muscle disease?

“I was horrified; terrified; upset. We needed answers.”

Those answers came quicker than Charlotte anticipated. The following day the phone call came inviting the family to see a consultant.

Charlotte said: “We knew this could not be good news, but suspected that Elsie had a weak form of muscular dystrophy and that, at the worst, she would be wheelchair bound and unable to walk.

“What we received seemed far worse than we could have imagined. Our world fell from underneath us while we looked at Elsie’s smiling face, oblivious as to why we were so distraught.

“How would we carry on as normal? How could we live, waiting for our baby to become so disabled that we wouldn’t recognise her anymore?

“Well, we couldn’t. We couldn’t live like that. Chris and I made the decision that we would not just accept the bleak future laid out in front of us and spend whatever time we have wasting it on what might have been.

“Instead, we decided we would try to live each day as it comes, making the most of Elsie and her good days.”

And so they began focusing their energies on making a positive difference to Elsie’s quality of life, given that experts were warning them that the specialist equipment Elsie would need was hugely expensive.

Just one month after their world fell apart, they began doggedly rebuilding, starting by setting up ‘Team Elsie’ in the shape of a funding page.

In less than two weeks of Elsie’s story being shared online, people had generously given £3,000.

Charlotte said: “The response was incredible. We’re so grateful, and were overcome with emotion as people asked us how they could help. It meant a lot us, and will mean a whole lot more to Elsie.”

Since then, Chris’ dad and brother ran wearing their ‘Team Elsie’ t-shirts in the Mansfield 10k to raise money and awareness, and some baby group friends have organised a family fun day on Sunday, September 13, from 2.30pm to 5pm, at The Post Mill Centre in South Normanton.

Dad Chris said: “We would appreciate everyone’s support on that day.

“It should be a great family afternoon out, with a bouncy castle, cake stalls and a raffle with gifts generously donated by local businesses.

“We feel very humbled at the help we have been offered so far, but know we have a long way to go.

“Our initial goal is to raise £15,000 as this is what a good wheelchair will cost, which Elsie will require when she is three.

“Currently we are awaiting a ‘Whizzybug’, a pre-motorised wheelchair for 18-month plus children, which is kindly being donated by SMA support uk and designability.”

To donate, or hear more about Elsie visit gogetfunding/team-elsie