The little girl is suffering from childhood dementia which is a symptom of Type 3 Sanfillipo syndrome.
Editor’s note: This article was originally published on August 19, 2020. It has since been updated.
It's true that a parent would go to any extent to make the dreams of their children come true. Some parents might take their time to make their children achieve their dreams but some don't have enough time, like this mum of 5-year-old Skyla-Rae Christine Clegg.
Stacey Reynolds was the happiest mother when she welcomed Skyla-Rae into this world. Her moments of happiness have now changed into desperation to create happier memories for her child even if it means that later she won't remember any of them.
Skyla-Rae has been diagnosed with the rare Sanfillipo syndrome, reported The Mirror. One of the symptoms is dementia which means at times she can't even recognize her mum, Stacey. The disease and dementia will also affect her other bodily functions i.e she will eventually forget everything she was taught till now along with the loss of eyesight.
But Stacey is determined to make the remaining days of her daughter as memorable as possible. She is raising funds to take Skyla-Rae for one last trip to Disneyland so she can feel the happiness that she deserves before she loses sight. "Since she was diagnosed in March, her symptoms have progressed a lot and they're worried that it is progressing quicker than they expected," revealed Stacey, who is also her daughter's full-time carer.
"She used to be such a happy little child, always saying 'mummy' and 'I love you' and now she can't even say one word - she'll eventually lose her ability to do everything," added the emotional mother.
"This disease is killing her; she could be gone tomorrow or in six months time but we haven't been given an official age or time it could happen so we try and live every day as if it might be her last," she further added.
Diagnosed in March with Type 3 Sanfillipo syndrome, the adorable girl was initially diagnosed with late development and autism when she was even younger. Sanfillipo syndrome primarily affects the brain and the spinal cord which is why Skyla-Rae is suffering from childhood dementia. The disease has left her unable to do even basic things like communicating, walking, or swallowing food.
The 25-year-old mum has set up a GoFundMe page in the hopes of raising £5,000 ($6,597.52) for the last family trip which she hopes they'll be able to make by the end of November this year. According to the page, Skyla-Rae recently went through an operation in which a feeding tube was attached to her belly button so she could be fed every 4 hours to get proper nutrition in the form of a liquid diet. This operation had to be done because dementia left the little one bound to the wheelchair and unable to walk, talk, or eat.
If a child so young goes through a situation like this, it's not hard to imagine the frustration they might be feeling. Skyla-Rae is no different. The hardships that she'd enduring tends to enrage her sometimes and she suffers from violent outbreaks.
Stacey, a mom-of-three from Oldham, Greater Manchester, explained her situation with a heavy heart and said, "Some days she will look at me as if wondering who I am which breaks me - it's not something you ever think you will have to face."
The young mother continued, "When she was younger, she was just Skyla-Rae to me, she didn't have a label and since being diagnosed she's going downhill so I wish I hadn't found out because maybe things would be different."
Talking about how the 5-year-old's behavior affects the other kids, Stacey explained, "She has no awareness of what's around her. She will sometimes have violent outbreaks towards her siblings and I'll have to explain to them that she doesn't mean it and she can't help it but they're children so it's difficult for them to understand," reported Families.
Stacey lives with Skyla-Rae and her two siblings, Jacob Ellis Peace, who's six and Sadie-Leigh Tattersall, who's just one year old and is as oblivious to the struggles of her mother and sister as any other baby.
"She used to be able to walk, communicate, eat and now she's just in a state of living and it's only going to get worse from here," Stacey added talking about Skyla-Rae and continued, "We've never been on holiday as a family before so it'll be nice for them all to go away together to their dream destination and spend some quality time together before Skyla-Rae loses her hearing and sight."
"I want her to be able to experience all of the sounds and the sights and enjoy herself one last time," she concluded.
The organizer of the fundraising page wrote, "Stacey's life now is all about making memories as Skyla is deteriorating fast and no one knows how long Skyla has left to enjoy watching princesses on tv or dressing up as a princess which she likes to do." She requested potential contributors to consider the plight and struggle of Stacey and her journey to make her daughter live a lifetime of memories in the time she has left.