A single mum has shared her heartbreak over how she “lost (her) daughter overnight” when her little girl developed a rare disorder that has left her unable to walk or talk. Poppy Allard, who is now 10 years old, appeared to be a perfectly healthy infant, hitting all the usual milestones until she was about 15 months old, when her condition took a dramatic turn for the worse.
Mum Victoria, a 41-year-old nurse, recalled how “alarm bells rang out” as Poppy ceased making sounds, stopped responding to her name, and lost hand function. After being referred to Clinical Genetics at Guy’s Hospital in London, Poppy received a diagnosis of Rett Syndrome at two years old. This incurable condition affects brain development and strikes approximately one in every 10,000 girls born each year, as per NHS data.
Rett Syndrome predominantly impacts girls and leads to profound mental and physical disabilities. Despite this, individuals with Rett Syndrome maintain their cognitive abilities, effectively becoming prisoners within their own unresponsive bodies.
In an inspiring act of solidarity and support, Victoria’s sister Hannah Prebble is embarking on a gruelling 200km triathlon challenge over a month to fundraise for Reverse Rett, a British charity dedicated to finding treatments and ultimately a cure for Rett Syndrome.
Victoria, also mother of 13-year-old Daisy, recounted the heart-wrenching change in her youngest daughter: “Poppy was about a year old and everything up until that point seemed absolutely normal. All her milestones were coming up as you would expect … I didn’t really think for a minute that there was any problem. One minute, I had this really smiley, babbling baby, and then the next day, it was like she was gone.”
Initially, Poppy, who was born in 2014, appeared to be developing like any healthy child. Victoria, from near Folkestone in Kent, said: “She sat up, she was very engaging, she started to smile and babble. She was using her hands to play with toys and pick tiny things up that she found in the carpet that she was not supposed to. I didn’t really think for a minute that there was any problem.”
However, a few months past her first birthday, Poppy’s development took a distressing turn—she stopped making progress at around one year and regressed at 15 months.
“As she passed the year mark… she sat up, but did not move and we were not getting any more development with her motor skills, so she didn’t start to pull herself up on furniture and things like that,” said Victoria. The situation abruptly worsened, leaving Victoria shaken: “And then on the particular day, it was almost like I lost her overnight, she suddenly just stopped engaging.”
The alarming deterioration led to panic and fear, as Victoria noticed drastic changes: “She stopped looking at me, she didn’t answer her name – she wasn’t making any noises. It was quite terrifying because that’s when it really hit that something very serious was wrong.”
Rett Syndrome usually manifests between six to 18 months of age, with children often losing previously acquired skills and failing to reach further developmental milestones. When Poppy began showing concerning symptoms, she was initially referred to a physiotherapist who suggested a potential genetic or chromosomal disorder due to her low muscle tone.
Victoria recalled the moment of realisation that Poppy might not develop like other children as hitting her “That’s when it hit me like a bus, and I started to realise that she probably wasn’t going to be a typical child in the sense that we see a typical child, and that was very emotional,”. She described the period of waiting for a diagnosis as a “harrowing time, with many sleepless nights”.
Seizures are a common symptom of Rett Syndrome, and Poppy had her first seizure at three years old, although they have been relatively infrequent since then.
“I was actually driving in the car and she was in the back of her car seat, her eyes rolled to the back of her head and she became very, very vacant,” Victoria recounted. “I think she stopped breathing momentarily and she was very pale.”
Victoria described it as both a “blessing and a curse” that Poppy is cognitively similar to an average child, understanding things easily. She added that it’s a “really common misconception” that children with Rett Syndrome can’t possess strong cognitive abilities.
To communicate, Poppy uses Eye Gaze technology, which involves looking at symbols on a screen.
Victoria, Poppy’s mother, shared: “Her communication has returned – as much as it’s not typical, I know exactly what she wants, I know exactly what she needs.” Poppy is scheduled for hip surgery this summer and will have metal rods inserted into her spine in the coming years due to scoliosis.
Being a single mum to Poppy and her other child Daisy has been “extra scary”, Victoria admitted, despite receiving support from her parents. She expressed her concerns about potential health deterioration that could require round-the-clock care or prevent Poppy from attending school, saying: “For example, if her health really deteriorates and something happens which means that she needs to be cared for 24/7, or she couldn’t go to school, then I don’t know where that leaves us as a family financially and how we would manage.
“Basically, it makes all of the uncertainties of the condition a lot worse I think, because if there’s someone working with you as a team to do things together, it’s very different. We don’t know what the future holds. We don’t know what’s coming, but we just have to kind of roll with it and deal with what happens as it comes.”
However, Poppy’s “very special personality” has endeared her to healthcare professionals involved in her care. Victoria affectionately refers to her daughter as a “I call her a ray of sunshine, because despite everything that she has to face and everything going on for her, she’s so cheerful. She wins the hearts of people that she meets… people want to work hard to look after her because of how bright her personality shines through.”
Victoria expressed her deep gratitude towards her sister for raising funds for Reverse Rett, stating, “It really means a lot to me,” For more information on Hannah’s fundraising efforts, visit gofundme.com/f/hannahs-100km-triathlon-mashup-for-reverse-rett-poppy.
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