A mother has paid tribute to her 'cheeky' and 'sassy' little girl who touched the lives of thousands as she battled a genetic metabolism disorder up until she died at nine years old.
Skyla-Rae Christine Clegg lost her fight with Sanfilippo syndrome, which is considered a form of childhood dementia, on January 9 this year, just days after her ninth birthday.
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While Skyla had lost her mobility and was unable to eat or open her eyes towards the end of her life, mum Stacey Reynolds said her bright smile and bubbly personality shone through the dark times and kept the family strong.
The 28-year-old from Sholver said: "She was just a full-on cheeky, sassy, funny girl.
"She loved dancing, fancy dress and was just amazing - always laughing.
"When we went out - she had a thing for men, so she'd run up to them and wrap her arms around the nearest man she could see and cling on to their legs.
"She was far from shy."
Skyla's health battle first started in March 2020 when, at just five years old, she was given the terrifying diagnosis of Mucopolysaccharidosis (MPS) type III.
Sufferers don't typically live beyond early adolescence and the syndrome primarily affects the brain and central nervous system, deteriorating over time.
Her mum said: "When we got the diagnosis, I suppose it didn't really hit me.
"I thought, this can't be real. This is my little girl.
"Nothing is going to take her away from me."
Then lockdown hit the country mere days later and the family were left to adapt to Skyla's deteriorating health with little to no help.
Stacey, a full-time carer, said those times were particularly tough because she was on her own.
She continued: "I had no support and then, because of how poorly she was, I didn't want anyone around because if she did contract anything, it could have led to her deteriorating faster or even passing away.
"I just secluded me and the kids from everybody."
Despite the struggles, Stacey said they made precious memories at home together.
"We had the best time - a Disneyland time because we sang and we danced", she added.
But Skyla did lose her mobility and eventually her ability to eat and when she started to choke on her food, Stacey said she "fought" with consultants to get Skyla adequate care and she was eventually fitted with a feeding tube.
Home life was also stressful for Stacey as she raised her three other children and provided round-the-clock care to Skyla, who struggled to sleep.
She added: "That's just how it was. I got on with it because that's what life was like.
"Without all the hecticness, it wasn't my life."
In January last year, the youngster then took a turn for the worse as she contracted Respiratory Syncytial Virus (RSV) and became "weaker".
Stacey continued: "The doctor wouldn't give me a heart rate monitor because they said I'd be too paranoid about it, so I eventually bought my own.
“When she got really poorly, you could see she was really poorly, I put the heart rate monitor on and her heart rate was at 40 so I called an ambulance.
“Then she was in Resus for hours and hours, trying to get her heart rate up. She suffered then.
“Every other month, she was having a cardiac arrest or a respiratory arrest at home.”
In one particularly terrifying incident, Stacey said she called an ambulance and was instructed to perform CPR.
She said: "I went to start it but I just couldn't. I just froze.
"I knew what I was supposed to do, but I just couldn't.
"My partner basically pushed me out of the way and he took over and saved her life.
"It was so scary but then the next day in hospital, she was just laughing. Literally the day after, she was laughing her head off."
@bootifulboomerang4 #endoflifecare❤️ #mygirl #skylarae #skylasstory #skylaswish #sanfilipposyndrome #childhooddementia #fypシ #fyp ♬ I Get to Love You - Acoustic - Mysha Didi
On December 27 last year, the youngster was then taken via ambulance to Derian House Children's Hospice for her end-of-life care.
Stacey said: "In the ambulance, she was squeezing my hand.
"She hadn't opened her eyes for the past two or three weeks and she was squeezing my hand, as if to say I was doing the right thing."
Then a few days later, Skyla opened her eyes for the first time in weeks which Stacey took as an opportunity to comfort her daughter and promise her that she would be okay.
She added: "She was just looking at me as I was speaking to her and I just knew that it wasn't fair for me to keep her here.
"So I told her, close your eyes, rest, I'm going to be okay.
"I've got to keep that promise now, that I'm going to be okay."
Stacey said staff at the hospice were "amazing", adding: "They listened to me. They put Skyla's best interests first."
Meanwhile, she said other healthcare professionals were advising the family Skyla could be taken home and said she would be around for the next few weeks.
Stacey continued: "An hour after that meeting, she passed away.
"It just goes to show it was Skyla's way and Skyla's way only.
"So that's my new motto - what would Skyla do? I don't think Skyla would follow the rules and that's my way of life now."
The mother of four said her daughter coped "amazingly" throughout the nasty battle with her syndrome.
"She never let it get her down.
"She fought so much in the last three years of her life. She went down rapidly but she fought off so many things and came out laughing.
"She never once complained. She was just unbelievable - literally my inspiration.
"She was just incredibly strong. I've never known anybody like it.
"She's my hero. I promised her I'd be alright and I'd make her proud, so that's what I'm going to do."
The inspirational youngster leaves behind her three heartbroken siblings, Jacob, age 10, Sadie, four, and NJ who is 16 months old, all of whom loved watching films in bed and cuddling together.
Not only has Skyla left a lasting mark on her loved ones, but inspired the world with her story on TikTok.
The videos document the effects of the cruel disease as footage shows a younger Skyla, running around in costumes and playing like any typical little girl, to being held up in a hospital bed overnight and fighting off illnesses.
@bootifulboomerang4 #fypシ #skylaswish #skylasstory #samfilipposyndrome #terminalillness #childhooddementia #alwaysbemyfavoritememory ♬ original sound - Stacey Leigh
The videos also show Skyla's last few weeks in hospital, with one heartbreaking video by Stacey reading: "Never did I think we would get here this fast.
"It feels so surreal. The pain of watching and waiting is the worst part."
Stacey added: "She's very sadly missed - my four-year-old has a crystal that she's keeping safe because she says her sister is in there that she carries around with her now.
"But Sykla also made an impact on everyone she met and everyone who came across her story online.
"It's just amazing how many people she's touched and that gives me so much peace."
A GoFundMe page to raise funds to give Skyla a Disney princess-themed funeral and support the grieving family has been set up, which reads: "Skyla has three other siblings that have taken this very hard and a mother whose world has shattered.
"We want to give Skyla the best possible send-off without mum having to worry about anything and to have some memorial keepsakes made out of Skyla's clothes.
"Anything left over will be donated to Derian House where they cared the best for Skyla."
Skyla's funeral will take place on January 29 and will see four white horses carry the youngster in her Disney princess coffin to her final resting place.
Donations can be made to her send-off by searching 'Skyla-rae Sanfilippo Queen' or by clicking this link.
Stacey added: "Instead of mourning her life, we're going to celebrate it because Skyla loved a good party.
"She loved a good dance so we're going to remember her by doing that.
"I know Skyla wouldn't want us all to be mourning, but she is going to be so missed."
Do you have a story or a tribute for a loved one you'd like to share? Get in touch by emailing me at Olivia.bridge@newsquest.co.uk or DM me on Twitter @Livbridge
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