Tributes paid to a ‘beautiful soul’ Third tragedy for family affected by ‘defective gene’
A woman has paid tribute to her younger sister who “always put others first” after she died from a condition that had already taken the lives of two of her relatives.
Sarah Ann Kirby, 34, has paid tribute to her “amazing” little sister Scarlett Marilyn Kirby, who passed away on July 30 at the age of 25 after a lifelong battle against myofibrillar myopathy 6, a form of muscular dystrophy.
The Kirby family, from Bath, had already been struck by tragedy twice, after middle sister Samantha passed away in 2012 and the girls’ father, Martin, died when they were young from the same condition.
In a moving tribute, Sarah described Scarlett as a “true princess”, a “beautiful soul” who strove each day to not be held back by her condition.
Sarah, who works as a carer, also explained that their family has become all too familiar dealing with unimaginable tragedies due to their rare condition.
She said: “When other people are planning their Christmas dinners and family gatherings, we are planning funerals.
“Our family have a defective gene passed down from my father to my two sisters.
“It causes the muscles to waste away, the disease is very rare and we’ve been told we’re the third family in the world with this kind, so no one knows what to do.
“My father passed the gene to my two younger sisters, Samantha and Scarlett, but not me. My dad, Martin, died when he was 29, back when I was 10. Samantha passed in 2012 at the age of 23 and now Scarlett has gone at the age of 25.
“Scarlett was the youngest of us, who used to be spoilt by everyone because of that. She liked being looked after and mothered by our mum Anne, and she was.
“She was also a big Disney fan, she loved it and was like a princess.”
Sarah explains that Scarlett had been “holding her own” after moving out to a place in Keynsham.
Sarah said: “She lived by herself and also had a business making resin moulds and vinyl stickers so everything in my house is covered in those stickers now.
“Scarlett also had scoliosis and needed to use a wheelchair just after she left school but that didn’t stop her – she still went on the girls trip holiday, went clubbing – she said ‘nothing is going to stop me’ and it didn’t.
“She even got her driving licence too. She was determined to do everything normal kids do.
“Within the last few months, she had to use her breathing machine more, whereas she had been able to have breaks off it.
“She also lost weight and ended up in hospital where the doctors told us there was nothing they could do as it was due to the deterioration of her condition.”
Sarah explained how the family has coped with a heartbreaking degree of loss as a result of the condition.
She said: “We knew what was going to happen, and we all did talk about it, which I think helped my own children understand that Scarlett wasn’t going to ever make it to an old age as she wasn’t very well.
“Everyone is saying to me, ‘Oh you’re so strong,’ but the truth is I don’t know any other way. If I crack up, my whole family cracks up.
“I’m keeping busy planning a Disney princess-themed funeral as that is what she would have really wanted. We have a Gofundme set up to cover costs which so many have kindly donated to.”
The Gofundme says: “We were planing a welcome home party for Scarlett when she was discharged from hospital.
“We spoke about the party right up until the end. The biggest reaction we got from her was when we spoke about the welcome home party, her eyes opened and she smiled. She loved family gettogethers. She loved sitting and watching all the family getting drunk and dancing around the sitting room. She was a beautiful young lady with a beautiful soul.”
Sarah added that Scarlett “doted” on her nieces and nephews and was so family oriented. Scarlett attended Hayfield Girls School and Southdown Junior School before that.
She said: “She would always help others first, always putting other people first was Scarlett – always making sure everyone else was OK.
“I have four children, my youngest I had six months ago – Scarlett did get to meet him and hold him. She doted on her nieces and nephews.”
Sarah worked for 11 years at the Royal United Hospital in Bath and then the Gracewell of Bath care home.
“I’m a carer and I think in a way I was meant to be – so I could help my family. My medical knowledge came in really useful to help.”
She added: “All we hope is that this is the end of our family tragedies.”
Scarlett’s funeral will be held on August 19 at Haycombe Cemetery.
Anyone wishing to donate to the family’s Gofundme appeal can do so at https://uk.gofundme.com/f/ scarletts-final-send-off