A mum-of-five “may never speak again” after losing her voice due to a rare condition.
Teacher Louise Lavery, 49, from Blackpool, Lancashire, couldn’t muster more than a “strangled squeak” when she woke up on the day of her son’s graduation.
Louise’s speech issues first cropped up seven years ago while working as a religion and philosophy teacher.
The busy mum thought she had just been speaking too much until her voice started to break more often.
She eventually went to a consultant who told her to look after her voice and to take up speech therapy.
In July 2019, Louise was travelling to her son’s graduation when her attempts to speak caused “spasms” in her larynx.
“Every time I attempted to speak my larynx would go into spasms and the noise I made was either nonexistent or a strained, strangled squeak,” Louise said.
“It was very distressing and the more I attempted to push it out the worse it would become.
“I hoped and prayed that my voice would return, but it didn’t.”
Louise saw a voice specialist who diagnosed her with laryngeal dystonia, a chronic voice disorder caused by spasms of the muscles of the voice box.
She took time off work on sick leave, hoping she would be able to return after having some treatment.
She said: “Life became difficult, my job almost impossible to carry out.
“I could manage the basics but anything more is too much of a struggle.
“I do have some good days and moments where my voice will be audible, although the spasms are ever-present.
“The condition is incredibly isolating as the effort required to speak, often overrides the need, so I remain silent.”
One of the hardest things for Louise was not being able to speak to her five children – Lucy 24, Luke 23, Jack 22, Leah, 19 and Leo, 14.
She said: “It was difficult when I lost my voice as all of our children were at quite pivotal points in their lives, so either going to university, leaving university, taking exams, etc.
“I just wasn’t able to speak with them, or advise them, or help them in the way that I wished to.
“When your children are struggling, or making important decisions you just want to be able to encourage them, or just chat.”
She started undergoing treatment, which involved injecting botox into a thin muscle in her neck.
However, the treatments are risky as if the positioning is not precise, it can cause her airways to become blocked.
On two separate occasions, Louise’s airway has closed and she has been taken to hospital unable to breathe.
With the risks involved, Louise realised that botox injections were no longer an option and she decided to look at other forms of treatment.
Louise – who had to give up her job due to the condition – found a study in the US involving trial medication.
She had to raise £6,000 to travel to the states for the Harvard University trial – a target she hit in just over a month with the help of friends, family and former students.
The money allowed her to travel to Canada two weeks ago and she is due to start the trial soon.
She said: “What really humbled me were not only the amount of family, friends and my parish church community who helped us but also many of my former students heard about the story.
“They shared messages about how I’d help them achieve their dreams and the impact I’d had on their education, it was truly overwhelming.
“It was largely down to their efforts that the journey has become possible.
“These students are now adults and to think that they still appreciate the work I did then is truly astonishing.”
She added: “Losing your voice doesn’t sound that bad.
“However, the loss that accompanies this is truly devastating, the loss of job, the loss of self, the loss of being able to simply chat with friends and family.
“Your voice plays a huge part in who we are and I don’t think people realise this, until it’s gone.”