Meet Ryan and Sophie Meehan. Ryan aged 8 and Sophie aged 5 both suffer from Mitochondrial Disease Complex 1 chain 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, intractable and uncontrollable seizures known as Lennox Gastaut Syndrome, cerebral palsy, brain lesions and severe right sided weakness. Sophie has also suffered from 2 strokes.
Ryan attends a mainstream school for four hours per day but unfortunately Sophie’s parents have been told that her medical needs are too complex for her to attend a mainstream school.
Ryan and Sophies parents are their full time carers and have never been offered respite services. “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.”