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Case Studies

Rob’s Story – A student with Rod Nemaline Myopathy Nominated for a Young Person’s Resilience Award

Robert has a very rare neuromuscular genetic disorder ‘Rod Nemaline Myopathy’. He breathes through a tracheostomy attached to a ventilator. Robert requires 24/7 care all the time. Robert is also deaf in one ear which is a side effect from being attached to the continuous noise of the ventilator. Robert is unable to move apart from one finger which he operates to control his wheelchair but requires someone to place his finger on it. Robert has a sclerosis of the spine which means he is locked over to one side. He also tires very easily and is unable to mix with other children because of the high chance of getting infections.

Robert is very clever and at the end of key stage four, he achieved high cognitive scores for reading, spelling, processing. His interests include reading, sports, computers, maths, science, geography, cookery and any practical activities linked with these, an array of subjects. Robert has a very supportive family and they also help with all school activities.

Over the past 2 school years, Rob has completed ITQ Level 2 and ICT Level 2 with Nisai.

Comments from Helen (Rob’s home tutor): “Just emailing to say it was an absolute pleasure to meet you at the Awards ceremony on Monday. I also wanted to personally thank you for going up to Barbara (Rob’s mum) after the ceremony and acknowledging how special Rob is and how disappointing it was that Rob didn’t win. I know this meant a lot to her and we appreciate your kind words very much.

Barbara is as remarkable as Rob is and all his family have been united in giving Rob all the love and care he has needed over what has been a remarkable eighteen years. Rob was three years old when he had a cardiac arrest and with his condition was not expected to live beyond that year so it is truly remarkable that he is living his life in the fullest way he possibly can and enjoying every day.

On another note, I also wanted to say how great it has been to find NISAI and to be able to have spent the last two years working with your fantastic team. I only wish we had found NISAI years ago especially when Rob approached secondary school age as support and links back then were very scarce, to say the least!

However here we now and lucky to be part of NISAI where nothing is too much trouble for your team. They are so supportive, friendly, fun and caring. It is amazing to be part of NISAI and we hope we will continue to be part of it for many more years.

Karina has been amazing and fantastic in so many ways with Rob. We will never forget how she nominated Rob for the award and as Rob said, ‘It’s not the winning that’s important it’s the taking part’.

Thank you also for the very kind and generous gift of £50 you have set up for Rob he will be delighted to receive this especially as it is his eighteenth birthday on Friday and quite a landmark for him. We will discuss with him what he would like to have with the money.

I hope we have the pleasure of meeting again at some point in this incredible journey.”

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