Case Study - Keith and his Mum

Mitochondrial diseases are a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells and convert the energy of food molecules into the ATP that powers most cell functions.

The most common symptoms are:

• Poor growth.

• Loss of muscle coordination, muscle weakness.

• Neurological problems, seizures.

• Autism, autistic spectrum, autistic-like features.

• Visual and/or hearing problems.

• Developmental delays, learning disabilities.

• Heart, liver or kidney disease.

Keith is 26 and lives a Care Home. A wheelchair user, he has partial sight loss and mitochondria disorder stage 3. His mother who is also his carer has Mito 1 & 2.

They came across the group by accident. They were visiting the Mariners Centre and his mother wondered what the FVSC was/did. Keith had recently moved from Glasgow, under the care of South Lanarkshire Council. As his condition progressed it was felt that the care home in Forth Valley was more suited to his current needs. His mother was not familiar with the area and did not know what facilities were available. She brought Keith along to the Carers

Wellbeing Café the next week and was overwhelmed with the advice and support that was offered by the project organiser and the advice of other members of the group. She left feeling more confident and returned with more questions the following week.

For the first couple of weeks, Keith was very quiet and withdrawn and didn’t fully engage with the rest of the group. The turning point was when the group had an outing to the Tenpin Bowling. Suddenly Keith came out of his shell and was giving coaching advice to everyone. The secret seemed to be “Focus”. It was wonderful to see the banter between Keith and much older members of the group. This positive relationship has continued ever since regardless of the activities.

His mother feels that the care home that he is in does not have enough staff support to stimulate and take him out to activities that he would like to do. The Carers Wellbeing Café has filled a gap in his needs. In particular, he has enjoyed outings. One outing, in particular, was a highlight for him as a keen football fan was a visit to Falkirk stadium. Both Keith and his mum were amazed by the view over the pitch from the café and stayed on after the group session had finished.

We have also helped to facilitate another interest of Keith’s which is art. During one of the Carers sessions we introduced Art therapy which Keith thoroughly enjoyed and his mum commented that it was an ideal activity for him. He is now a fully engaged member of the group providing the latest football news and his own opinion on all sorts of topics.

It was particularly touching that when it was his birthday the other members of the group all brought cards and gifts for him.

The sessions have really benefitted Keith and also his mother as well as being a Carer for her son she is also a carer for another young person over in Glasgow.

All that attend the group have become really close with Keith and his mum as they have very little or no family support. Each week it’s a delight to hear Keith and his mum talk about one of their adventures in exploring the local area.

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