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An update from Carmela - August 2020

I’ve had to deal with a rollercoaster of emotions from Carmela these past few months. A lot of sadness and tiredness and pain. Lockdown has had a devastating effect on her physically and all of us mentally.

The fun activities that she normally did as part of her physio, like swimming and horse riding, were cancelled, but without them her body seizes up – muscles become sore and joints tighter and this has a long term affect on her mobility.

She has completely lost the movement in her shoulder girdle so reaching up has become hard for her and her arms have become weaker. The muscle strength in the top half of her body is really poor now. We are constantly fighting a losing battle because once the muscle function starts to go, it is gone forever.

When you are trapped at home for weeks and weeks, seeing no-one and going nowhere, all the focus is on this awful condition that has taken over our lives. You can’t escape it. There have been lots of upset days when she has said: “Mummy, can you make my Muscular Dystrophy go away?”

She was also missing her daddy. He was delivering Covid-19 test kits and in and out of hospitals so the odds that he might come in contact with the virus were high. We could not take the risk of having him in the house and he moved into Carmela’s log cabin in the garden. He slept on an air bed and we left meals for him on the doorstep. It was hard for both of them.

 

I was really anxious because her muscles are so weak now that catching Coronavirus would almost certainly prove fatal for her. So for four and a half months she could not cuddle her daddy. He would stand at the window and they would communicate using sign language That’s just so difficult and strange for a child to deal with.

Carmela missed him dreadfully. She also missed her Julia’s House carers. To start with I was really cautious and didn’t want anyone in the house for fear of infection, even though the nurses and carers were using strict infection control measures to keep families safe.

But Carmela needed some distraction from her aches and the pains and the sadness of it all. Once she started having care sessions again the giggles and the laughter returned. The sad days went away and she was upbeat and happy again. She just loved having the company, someone other than miserable mummy to talk to!

Carmela had them doing all sorts – dressing up as mermaids complete with PPE, lots of crafting and she even got them to pretend to give birth to her dollies! Carmela had been asking for a baby brother or sister and decided she wanted to play at having babies. The carers were brilliant and went along with it – complete with realistic sound effects!

These visits didn’t just boost Carmela, they helped me too. They took my mind off a myriad of things and gave me the mental space I was craving. While the care sessions were happening I would go for long walks over the hills, a good five or six kilometres to really clear my head.

Carmela loved helping Julia’s House by taking part in the online Thankathon - she and Martin Clunes were quite the double act! He has invited her to have a ride on one of his horses when all this is over. Carmela can’t wait!

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There have been lots of upset days when she has said: “Mummy, can you make my Muscular Dystrophy go away?

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