Just4Children want to help Ronnie and Rory to achieve the best independent, pain free life possible and to reach their full potential.
Ronnie and Rory are our twin boys, who were both diagnosed with Cerebral Palsy and severe visual impairments at 11 months old. At the time of diagnosis, we were told the future was uncertain for both boys and therefore neither of them may be able to sit or walk unaided.
In September 2022 we nearly lost our beautiful Ronnie due to his first seizure, which led to him being put into an induced coma. After several more seizures, freights and many hospital admissions Ronnies seizures are now controlled by daily medication, and he has been given a confirmed diagnosis of Epilepsy. 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.
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 SDR (Selective Dorsal Rhizotomy) 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.
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, any housing adaptions that are needed and any equipment 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.
Thank you all from the bottom of our hearts for your kind donations, it truly means the world to all of us xx
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