Carmela, age seven, has a progressive muscle wasting disease called LMNA Congenital Muscular Dystrophy.
Told by her mum, Lucy
Carmela developed well in the first year of her life before it became apparent that she had a problem with her gross motor skills. Carmela struggled to walk up hills and was unable to climb or crawl up stairs without help. She was diagnosed with hypermobility and finally after much persistence, with LMNA.
Frustratingly, care providers said that Physiotherapy was a waste of money for a child with a condition that would not improve. This led us to speak to other parents and eventually we found Brainwave.
We attended Brainwave’s Initial Assessment when Carmela was four and what an awesome experience it was! Dawn and Mike, (Brainwave Physiotherapists) were so brilliant, fun, thorough and attentive and explained everything in detail, measuring Carmela’s range of movement in her joints whilst assessing her muscle power ability. They got to know Carmela and incorporated the fun things that she likes to do in a bespoke exercise Programme.
The activities were gentle and controlled mobility exercises which wouldn’t exacerbate Carmela’s condition. These helped stop her joints from stiffening and kept her muscles active, whilst taking care not to cause unwanted fatigue. This all helped maintain independence and keep her movement up as much as possible.
The exercises were printed, and the video demonstrations recorded which helped us and Carmela if she wanted to do the exercises herself. This also meant Carmela’s teaching assistant at school could help with stretches and mobility routine.
Having muscular dystrophy drastically affects fatigue and energy levels. Muscles become very tight and sore if they haven’t been gently activated, so when lockdown happened, we were fortunate that we had an updated Therapy Programme from Brainwave. Carmela continued her exercises whereas others in her position were unable to leave their house to attend physio sessions and maintain their physical health.
It’s three years since we started attending Brainwave. Carmela is still fairly mobile, has made small but promising improvements in her range of movement and has increased muscle strength in some parts of her body. She is such a happy little girl and seeing this improvement has helped boost her self-esteem and self-motivation and she is then willing to continue carrying out the exercises two-three times a week.
Having Brainwave as part of Carmela’s ongoing care treatment means so much, we have a lot of confidence in the Physiotherapists, and the Programme benefits Carmela tremendously as it helps her manage her progressive disease. She looks forward to seeing Mike and Dawn every six months because they make it so much fun! It also gives me as a parent, peace of mind and if there’s anything of concern that’s highlighted, we raise this with her neuromuscular team at the hospital.
To any parent with a child who has a muscle wasting disease, I would highly recommend Brainwave as part of your child’s ongoing care treatment.