A single mother says she felt like she “lost” her daughter “overnight” after her child developed a rare neurological disorder which prevents her from walking and talking.
Poppy Allard, now 10, was born a seemingly healthy baby and was babbling and picking things up as expected, when, at around 15 months, her behaviour suddenly changed.
Her mother, Victoria Allard, a 41-year-old nurse from Kent, said “alarm bells rang out” when Poppy stopped making noises, answering to her name, and lost the use of her hands.
Poppy was referred to Clinical Genetics at Guy’s Hospital in London, where, at the age of two, she received a diagnosis of Rett Syndrome – an incurable disease which impacts brain development, leading to severe physical and mental disabilities.
Rett Syndrome affects about one in 10,000 girls annually, according to the NHS.
Victoria’s sister Hannah Prebble is now taking on the challenge of swimming, running and cycling 200km to raise money for Reverse Rett, a UK charity working towards treatments and a cure for Rett Syndrome.
Mother Victoria, whose second child Daisy is 13, said “everything … seemed absolutely normal” when Poppy was about a year old.
“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.”
Poppy was born in 2014, and at first she seemed to be a healthy baby.
“She sat up, she was very engaging, she started to smile and babble,” Victoria said.
“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.”
But a few months after her first birthday, everything suddenly changed.
Poppy stopped progressing at around one-year-old, but at 15 months, she regressed.
“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,” Victoria said.
“And then on the particular day, it was almost like I lost her overnight, she suddenly just stopped engaging.
“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 typically becomes apparent after six to 18 months of age when children often lose skills they had gained and stop reaching further milestones.
When Poppy’s troubling symptoms started, she was initially referred to a physiotherapist, who suggested she might have a genetic or chromosomal disorder because she had low muscle tone.
“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,” Victoria said.
Victoria described waiting for a diagnosis as a “harrowing time, with many sleepless nights”.
A common symptom of Rett Syndrome is seizures, and Poppy experienced her first seizure at age three, although they have been relatively infrequent.
“I was actually driving in the car, and she was in the back of her car seat, and her eyes rolled to the back of her head, and she became very, very vacant,” Victoria said.
“I think she stopped breathing momentarily and she was very pale.”
Victoria said it is a “blessing and a curse” that “cognitively, she’s like an average child” who understands things easily, adding it is a “really common misconception” that children with Rett Syndrome cannot have strong cognitive abilities.
Poppy uses Eye Gaze technology, where she looks at symbols on a screen that enable her to communicate.
“Her communication has returned – as much as it’s not typical, I know exactly what she wants, I know exactly what she needs,” Victoria said.
Poppy will be undergoing surgery in both hips in the summer and will have metal rods inserted into her spine in a few years as she has developed scoliosis.
Victoria said caring for Poppy and her other child Daisy while being a single mother had been “extra scary”, although she had had support from her parents.
Early signs of Rett syndrome
NHS
At first, the child will appear to develop and grow normally for at least 6 months. However, subtle signs may include:
- low muscle tone (hypotonia)
- difficulty feeding
- unusual, repetitive hand movements or jerky limb movements
- delay with development of speech
- mobility problems, such as problems sitting, crawling and walking
- lack of interest in toys
These symptoms typically begin from 6 to 18 months and often last for several months, although they can persist for a year or more.
“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,” she said.
“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.”
But Poppy’s “very special personality” has won the hearts of healthcare workers and professionals who have helped her in her development.
“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,” Victoria said.
“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 said she is “really grateful” to her sister for fundraising for Reverse Rett.
“It really means a lot to me,” she said.
To find out more, visit Hannah’s fundraiser.
