Heart transplant at 11 led to shocking diagnosis

What if? It’s the question that has run through Daniella Rosher’s head while daydreaming about how different her life could have been.

She had, up to the age of 11, been a typical fit and healthy schoolgirl, until she started struggling to catch her breath when she ran.

At first it was dismissed as just a cold, but after a trip to the GP, Daniella, of Oxford Road in Canterbury, was referred to medical special- ists for further examinations.

After months of tests, she was told she would need a heart transplant and just three weeks later, on June 4, 2006, she was woken by her parents saying a match had been found and a car was on its way to collect her. But despite a successful transplant, her health problems worsened.

The St Anselm’s pupil was unable to walk, resigned to life in a wheelchair and suffering severe breathing difficulties.

But medics were left stumped as to what was causing it.

It was only a chance conversation between her neurology doctor and another at a conference that her condition - the incredibly rare Bag3-related Myofibrillar Myopathy - was identified.

She was the sixth person in the world to be diagnosed with the disorder, which is part of the muscular dystrophy group and causes muscle wastage as well as breathing difficulties.

More than a decade later, 24- year- old Daniella, who underwent a tracheostomy at 17 to help her breathe, blogs about her journey to her ‘spoonie’ followers - spoonies the name of people with a chronic illness - through her website The Moon and All the Stars.

The self- confessed book- worm, who was moved from St Anselm’s to education hub KHNES in Canterbury to finish her studies, has also launched the Spoonie Book Boxes scheme, in which she sends boxes of books to spoonies to help them escape their daily struggles.

She admits that in the past she dreamed of what her life could have been if she hadn’t become ill, but says she is strong enough to live the life she has been given.

“I didn’t have anything wrong with me until I turned 11,” she said. “After my heart transplant, my muscles started to deteriorate, my breathing worsened.

“They thought I had a heart condition, they didn’t know what was wrong with me.

“When I got diagnosed with my actual condition, it had only just been discovered a year or two before.

“It should have been a relief, but being such a newly discovered condition meant there was so much not known about it.”

In her blog, she admits she previously had bad days in which she mourned the things she wasn’t able to do.

But the avid reader says the Spoonie Book Boxes project keeps her positive by giving others happiness.

“I’m a book hoarder,” she admits. “When I read I can be anyone and do anything, I can go anywhere. I suppose in a sense I can be ‘free’ in a way that I can’t be in reality.

“I had a massive collection of books but didn’t want to throw them away and it wasn’t easy to take them to a charity shop.

“So I asked my followers on Instagram, some whom are chronically ill, and said I’m willing to send them for free.

“Lots of people said yes and I thought it would be an amazing idea to send little boxes of happiness to people.”

Since launching the scheme last year, she has sent more than 110 boxes.

n For more information, visit themoonandallthestars.com.