A mother spoke about the impact her daughter’s shock diagnosis had on her life.
Ellie Hobbs, 15, was unable to walk due to a neurological disorder.
In November last year, Ellie from Leeds began suffering from a tic on her neck – it got progressively worse and resulted in further verbal and motor tics.
Within a few weeks she was suffering from non-epileptic seizures, until one day she woke up to find that she had lost her ability to walk.
Ellie was diagnosed with a functional neurological disorder (FND) in April. Leeds Live reports.
It is a condition where there is a problem with how the nervous system is working and how the brain and body send and receive signals.
Ellie’s mother, Sharon, 48, a midwife, started a disease because the disease is still very little known and treatment options are limited GoFundMe Page hopes to raise enough money for private professional treatment to help her daughter get better.
Sharon said, “Ellie had a tic in her neck in November, and her voice and motor skills were in December.
“Her head itched badly, her fist hit her chest and her voice made noises in her voice that made her say random things like” chicken nugget “or” Do you know this information? “Said.
“We went to the doctors and they told us it was just scared and it would get better.
“But it wasn’t like that, she started getting worse and having non-epileptic seizures – where she would land on the floor.”
Then one day, shockingly, Ellie woke up and could no longer walk.
Sharon said, “It was only one day that she woke up and couldn’t walk.
“Now Ellie has her good and bad days, but now most days cannot walk without crutches.
“We even look into a wheelchair for the days when she cannot walk.
“But I thought I couldn’t let my daughter go, so I referred her to a private physical therapist.”
Then, in April, after months of trying to figure out what was going on with her daughter, Ellie was diagnosed with FND.
Sharon said, “We finally got a diagnosis, but there is very little treatment and long treatment waiting lists available.
“We have now been discharged by the neurologist, but nobody seems to know much about FND or how to treat it.
“So we want to decide privately in favor of professional treatment. These include hydrotherapy and occupational therapy, as well as physiological help in managing this dire condition. “
So, Sharon, now has one set up GoFundMe hoping to raise enough money to send Ellie, now on medication to control her tics and seizures, to a private rehabilitation center in Sheffield.
“We hope she can go there in August when she is 16,” said Sharon.
“But obviously things could get better before we just don’t know.
“The thing is, the sooner it is treated, the faster Ellie can get better.”
While Sharon is doing everything possible to make sure her daughter is better, it is still not known what caused the FND in the first place.
Sharon said, “It’s like the body is collapsing and the tics and seizures are releasing tension.
“Something can start it, but the doctors, and even Ellie, can’t figure out what caused it.”
And although the disease turned her life upside down, Ellie got it at her expense.
“Ellie is so strong and doing really well,” said Sharon.
“[But] This really couldn’t come at a worst time for Ellie and with school and exams so we really want to get her treatment so she can keep going to college in September and dating her friends like a normal 15 year old. ”
Sharon says that through research and joining a number of support groups, she has found that there are many other people like Ellie who are struggling to get the support they need.
“There are so many families out there going through the same thing and there isn’t enough support,” said Sharon.
“It is so sad to see and it can be years before you get the help you need because the waiting lists are so long.
“More needs to be done to help and more services to be available.”
Unused donations will be forwarded to the FND Hope Charity.
You can donate on the GoFundMe page Here.