Ryan and Sophie Meehan both suffer from Mitochondrial Disease Complex 1 Chain Defect, a condition that causes a variety of complications to their health, growth and development. In addition, Ryan has been diagnosed with early onset dementia, ataxia, epilepsy, right-sided weakness, congenital brain abnormality, brain lesions, low muscle tone and severe fatigue. He is confined to a wheelchair when he leaves the house. Ryan attends a mainstream school for four hours a day.
Sophie suffers from severe epilepsy, intractable and uncontrollable seizures (Lennox Gastaut Syndrome), Cerebral Palsy, brain lesions and severe right-sided weakness. She has also suffered two strokes. Unfortunately, Sophie’s medical needs are too complex for her to attend school.
Ryan and Sophie’s parents are their full-time carers. They have never been offered respite services. Pam Meehan, the children’s mother, says:
“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.”