A single mother says that she felt that she lost her daughter “overnight”, as her child developed a rare neurological disorder that prevents her from walking and talking.
Popy Allad, now 10, one seems to have a healthy child born and was mumbling things as expected, when, when, in about 15 months, his behavior suddenly changed.
Kent’s 41 -year -old nurse, her mother, Victoria Allard stated that “the alarm’s bell rings” when the Popi stopped making noise, responded to her name, and lost the use of her hands.
Popi was referred to for clinical genetics at Guise Hospital in London, where, at the age of two, she received a diagnosis of rate syndrome – a incurable disease that affects brain development, causing severe physical and mental disability.
According to NHS, the rate syndrome affects one of the 10,000 girls annually.
Victoria’s sister Hannah Prebal is now taking a challenge of 200 km of swimming, running and cycling to raise money for the reverse rett, UK Charity is working towards treatment and is a cure for Retate syndrome.
Mother Victoria, whose second child is Daisy 13, said “everything … looked normal” when the Pope was about a year old.
“All his milestones were coming up as you would expect … I didn’t really think for a minute that there was a problem.
“One minute, I had this really smiley, grown child, and then the next day, it was as if she left.”
Popi was born in 2014, and first he looked a healthy child.
Victoria said, “She sat down, she was very attractive, she started smiling.”
“She was using her hands to play with toys and was picking up small things that she found in carpet which she was not going to do.
“I really thought that there was a problem for a minute.”
But a few months after his first birthday, everything suddenly changed.
Popi stopped progressing at the age of almost a year, but in 15 months, she came back.
Victoria said, “As she passed the year mark … she sat down, but she did not and we did not get any other development with her motor skills, so she did not start pulling herself on furniture and such things.”
“And then on a special day, it was almost the same as I lost it all night, he suddenly stopped getting entangled.
“She stopped looking at me, she did not respond to her name – she was not making no noise.
“It was quite terrible because when it was actually killed that something was very serious.”
Rate syndrome usually becomes clear after the age of six to 18 months when children often lose skills that they had received and stopped reaching the front milestone.
When the disturbing symptoms of the pope started, he was initially sent to a physiotherapist who suggested that he could have a genetic or chromosomal disorder because he had a low muscle tone.
“When it hit me like a bus, and I began to realize that he probably was not going to be a specific child in the sense that we see a specific child, and it was very emotional,” Victoria said.
Victoria waited for a diagnosis as “several nights with sleep haraam” waiting for a diagnosis.
Rett syndrome has a common symptom recovery, and Popy experienced her first seizure at the age of three, although they have been relatively unknown.
“I was actually driving in the car, and he was behind the seat of his car, and his eyes rolled towards the back of her head, and she was very empty,” Victoria said.
“I think he stopped breathing in a moment and he was very yellow.”
Victoria stated that it is a “blessing and a curse” that “cognitively, he is like an average child” who understands things easily, adding it to a “really common misconception” that children with retired syndrome may not have strong cognitive ability.
The pope uses eye gaze technology, where he sees symbols on a screen that enables him to communicate.
“Her communication is back – as much as it is not specific, I know what she really wants, I know what she really needs,” Victoria said.
Poppies will be surgery in both hips in summer and in a few years there will be metal rods inserted in its spine as it has developed scoliosis.
Victoria stated that a single mother was “additional scary” while taking care of Popi and her second child Daisy, although she had support from her parents.
Early signs of rate syndrome
NHS
First of all, the child will appear to develop and develop normally for at least 6 months. However, subtle signals may include:
- Low muscle tone (hypotonia)
- Food difficulty
- Unusual, repetitive hand movements or jerky limb movements
- Delay in development of speech
- Mobility problems such as sitting, crawling and walking
- Lack of interest in toys
These symptoms usually begin from 6 to 18 months and often live for several months, although they can persist for a year or more.
“For example, if his health really deteriorates and something happens, which means that he needs to take care of 24/7, or he cannot go to school, I don’t know where it leaves us as financially as a family and how we will manage,” he said. “
“Originally, it makes all the uncertainties of the condition very bad that I think, because if a person is working with you as a team to work with you, it is very different.
“We don’t know what the future is. We do not know what is coming, but we just have to roll with it and behave with dealing with what comes.”
But the “very special personality” of Popi has won the hearts of healthcare workers and professionals who have helped her in her development.
Victoria said, “I call it a ray of Sunshine, because despite everything that he has to face and everything is going on for him, he is very cheerful.”
“She wins the hearts of those with whom she meets … people want to work hard to take care of them because their personality is so bright.”
Victoria said he is “really grateful” for his sister to raise money for reverse rates.
“This really matters to me,” he said.
To learn more, go to Hannah’s Funderizer.
