- Ellie Dixon was diagnosed with respiratory papillomas at four months old
- Her mother Rachel Lynch said she ‘immediately knew something was wrong’
- Condition means benign tumours grow on Ellie’s vocal cords and voice box
- She has regular operations to remove them, to prevent them growing so big they obstruct her airways, leaving her unable to breathe
- Ellie is preparing to start school but her mother fears she will struggle to be heard among louder classmates as she can only whisper
- Miss Lynch, said: ‘We’re hoping school will help her find her voice’
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Four-year-old Ellie Dixon speaks only in a whisper after being diagnosed with a rare condition causing growths to form on her vocal cords
Four-year-old Ellie Dixon faces a daily battle to be heard, only able to whisper after suffering a potentially lethal vocal condition.
She is preparing to start school, but her mother Rachel Lynch said she fears her daughter will struggle, drowned out by her classmates.
Shortly after Ellie was born in 2010 she was diagnosed with respiratory papillomas.
The condition causes non-cancerous tumours to grow on the vocal cords and voice box and means the four-year-old faces regular operations to remove them.
Without treatment the lumps could growth so big they obstruct her airways, leaving her unable to breathe.
Miss Lynch, from Irlam in Greater Manchester, said her daughter barely speaks, and when she does all she can manage is a whisper.
The 23-year-old, said: ‘Ellie is keen to learn but unfortunately getting her voice heard will be desperately difficult for her.
‘At
nursery she was forever trying to answer questions yet her mates would
always get in there first as they were able to shout louder.
‘Ellie
knows the answer and puts her hand up but because she can only whisper
she tries to shout out the answer but other children shout out first.
‘Even
at three years old Ellie would want to stay in the babies room because she
was so scared of the older children shouting and screaming.
‘She never even plays team sports as she can’t scream loud enough to get the other players attention.
‘When
she is at birthday parties or sports days at school she often has to
sit on her own because she gets frustrated when other children don’t
hear her.
‘On some
occasions when she is at the park playing on the jungle gym, she will
come crying to her mum that the other children she doesn’t know tease
her because of her voice and she gets really upset.’
Miss Lynch is now hoping teachers at Ellie’s school will be primed to take extra care listening to daughter.
Prone to illnesses such as tonsillitis and ear infections which she can suffer from each month, Ellie dreads her operations as she has developed a fear of needles.
As each operation date approaches Miss Lynch said Ellie’s health diminishes and her voice becomes croaky while her energy levels drop.
The procedures last only one hour with Ellie under anaesthetic as the surgeon cauterizes – burns off – the growths on her throat.
When Ellie was four months old, doctors told her mother Rachel Lynch, pictured with Ellie, that her daughter had respiratory papillomas, a potentially life-threatening illness
Ellie has had more than 25 operations in her life, as surgeons are forced to regularly remove the lumps in her throat, to prevent them growing so large they obstruct her airways, leaving her unable to breathe
ONE IN A MILLION CHILDREN ARE DIAGNOSED WITH RARE ILLNESS
Respiratory papillomatosis is a rare medical condition, in which benign tumours or growths form in the airway and voice box.
They grow rapidly and can obstruct or block the airway, causing problems breathing.
Once removed the tumours can grow back, and so can need repeated treatments.
It is caused by the human papilloma virus (HPV).
The infection can be acquired during childbirth.
Five in every million children are diagnosed with the condition.
The symptoms, include:
- a weak cry
- feeding problems
- oisy breathing, like a whistle or wheeze
- a long-term cough
The symptoms tend to appear around the ages of two or three years old.
The growths regularly reappear and so sufferers often require repeated treatments and operations to remove them.
Source: Great Ormond Street Hospital
She is then put on a diet of ice cream for several days as her throat heals.
But even before the procedures Ellie struggles with liquid food such as mash potato.
It is unknown how the condition is started and cannot be tested for, however it is thought that the virus can be spread through the HPV virus found in cold sores, genital warts and some forms of cancer.
Miss Lynch, said: ‘From the moment Ellie was born I knew something wasn’t right as she wasn’t breathing properly.
‘Four months later she was diagnosed with papillomas and it was heart-breaking that my first child would have to undergo all of these operations – I had never even heard of it before.
‘Before she was diagnosed I noticed she was really quiet even when she cried you could barely hear it, but with Ellie being my first child I thought it was normal.
‘So far Ellie has been in surgery around 25 times.
‘It is no life for her to lead, she wants to be able to shout and scream like any normal child does and she can’t properly express herself because people struggle to hear her.
‘I don’t know how much longer I can stand there and watch her scream in terror at having to go through another procedure but she has no choice.
Miss Lynch, said: ‘From the moment Ellie was born I knew something wasn’t right as she wasn’t breathing properly. Four months later she was diagnosed with papillomas and it was heart-breaking that my first child would have to undergo all of these operations’
Ellie is preparing for her first day at school, where her mother hopes teachers will be primed to take extra care in listening to her daughter
‘Her bravery is inspirational but it
has got harder as she gets older, at least when she was a baby she
didn’t know what was happening but now she counts down the days.’
Ellie was diagnosed at only four months old when she had a check-up with her local GP.
While examining her throat doctors noticed the growth on her throat and only weeks later was booked in for her first procedure.
‘As she gets older her confidence is
growing and it is just wonderful to see. We’re just hoping school will
help her find her voice’
– Rachel Lynch
Even though Ellie often prefers to play
in silence and gets tired after only minutes of sports, her mother said
she is well looked after by her friends at school and loves watching
Disney films, including Frozen.
With the treatment, Ellie has a good chance of having perfectly functioning vocal cords when she is older, however she faces many more years of treatment.
Miss Lynch worries that as Ellie gets older, she may find it hard in school to have her voice heard and to join in with activities and admits that she has given home school a thought.
Yet she said she doesn’t want to isolate her daughter further and says that socialising with her friends has helped her confidence to bloom as well as taking her mind off the surgeries.
‘She is still like any normal little girl,’ Miss Lynch, added.
‘She loves singing – even if you can hardly hear it, and playing with her friends, as she gets older her confidence is growing and it is just wonderful to see. We’re just hoping school will help her find her voice.’
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