Meet Ryan and Sophie Meehan, who both suffer from Mitochondrial Disease Complex Chain 1 Defect. Ryan also has the onset of dementia, ataxia, epilepsy, right sided weakness, congenital brain abnormality, brain lesions, low muscle tone and severe fatigue. Ryan uses a wheelchair when he is out and about. Sophie suffers from severe epilepsy, uncontrollable seizures known as Lennox Gastaut Syndrome, cerebral palsy, brain lesions and severe right sided weakness. Sophie has also suffered from two strokes.
Ryan attends a mainstream school for four hours per day but, unfortunately, their parents have been told that Sophie’s medical needs are too complex for her to attend a mainstream school.
Ryan and Sophie’s parents are their full time carers and have never been offered respite services. They said “The only light in all of this for us is our hope that Liam’s Lodge opens sooner rather than later. We can go there as a family and there will be medical professionals on hand to help us and to allow us spend much needed quality time with our children.”