Twin baby boys diagnosed with cerebral palsy and severe visual impairments at just 11 months old need a 60,000 life-changing surgery. Rory and Ronnie Gunby are both unable to stand or walk unaided - and mum, Scarlet Gunby, describes their ability to see like "looking through a kaleidoscope".
The boys have both been diagnosed with cerebral visual impairment. Glasses can't help but have been prescribed to try and correct their squint, but it hasn't worked as of yet.
Ronnie and Rory, known as the Gunby twins, live in Rothley, and have been given an opportunity to have life changing surgery called SDR, or Selective Dorsal Rhizotomy. Unfortunately, the NHS cannot fund the procedure, so the family are looking to try and raise 60,000 from the local community so the boys can have a pain free, independent life and hopefully be able to walk on their own one day.
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Ronnie and Rory were both diagnosed with Cerebral Palsy and severe visual impairments at 11 months old. At the time of diagnosis, the family were told the boys' future was uncertain and they may be unable to sit or walk unaided their entire life.
In September 2022, Ronnie's life was at risk after he had his first seizure, which led to him being put into an induced coma. After several more seizures and many hospital admissions, Ronnies seizures are now controlled by daily medication, and he has been given a confirmed diagnosis of epilepsy.
But this didn't help Ronnie's recovery and development with cerebral palsy, according to mum Scarlet, with him remaining non-verbal and needing physio to try and catch up to his brother's progress.
Scarlet told LeicestershireLive: "The seizures really set Ronnie back and it has taken him months to recover. Ronnie is also non-verbal, but he has started to blossom with confidence in his communication skills and working very hard at physio to hopefully soon catch his twin brother up again.
"We have spent the last year doing hours of daily therapies to get them where they are today. However due to their late diagnosis and input from the NHS we still feel they have so much more potential.
"Ronnie and Rory's cerebral palsy causes them pain and tightness in their muscles, also known as spasticity. Rory can sit unaided for a few seconds and Ronnie is still unable to sit unaided, neither of them can stand or walk like any child their age.
"As a result of spasticity, they wake several times a night in pain with stiff legs crying out for help. This is heart-breaking to hear and something no parent should have to witness."
As part of discussions over the twins' long-term treatment, doctors have suggested they could undergo SDR, which would reduce their muscle tightness and help withy the pain they have.
Scarlet said: "We have recently had discussions with the medical professionals involved in Ronnie and Rory's care about long term treatment for pain. It has been suggested that a life-changing operation called Selective Dorsal Rhizotomy, (SDR), would greatly reduce this muscle tightness and take away the pain they endure.
"After a few of years of rehabilitation Ronnie and Rory should hopefully be able to move their bodies independently to live life using mobility aids to explore the world for themselves."
Unfortunately, the twins don't meet the criteria given by the NHS for the operation, so their family is looking to raise funding independently for both of them to get the treatment.
Scarlet added: "Currently Ronnie and Rory do not meet the NHS criteria for this operation, and therefore this is why we are fundraising for the procedures. Using the funds raised with Just4Children we will be able to pay for the operations, ongoing physiotherapy and rehabilitation so they can live the most comfortable lives going forward.
"They have filled our lives with endless amounts of love, pride and giggles in the last 2 years despite their daily struggles and in return we are hoping we can give them all they truly deserve to be independent and pain free.
"If you would like to give a donation of any amount this will make a huge difference to their lives and would mean so much to us all."
The family has raised more than 8,600 so far with their fundraiser, from 113 donations. You can visit the twins' donation page to find out more and donate.
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Twins Ronnie and Rory need 60k life-changing surgery to have a pain-free life - Leicestershire Live
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