Hi my name is Hafzah, I was born with a very rare muscle condition called nemoline rod myopathy; which effect every part of my muscle. I didn’t know about the condition until I had a muscle biopsy and I was diagnosed. My parents were told to enjoy as much as they could with me because children very rarely make it through.

So… I’ve endured endless chest infection and have even been on PICU with chest infections and now need 24/7 respiratory support via a tracheostomy with full ventilator support.

I have daily physiotherapy to keep my chest clear. Which can take a lot of time doing nebulisers pats and shakes whilst laying down and wearing a vest to shake my chest and to clear and using a cough assist machine to clear my chest and this procedure can be repeated numerous times to clear my lungs of gunk. As I have significant breathing difficulties even when I am in good health due to muscle weakness condition.

As I’ve repeatedly have had chest infection and had invasive IV antibiotics.

I require regular suctions to keep me clear of secretions as I am a silent aspirator anything down my wind pipe can cause a chest infection. Hence I am peg fed through a tube I’m my tummy.

I have very little independent movement I am hoisted into a wheelchair which I can use with my hand.

However over the years my back has caused me issues due to scoliosis of my spine. I was supposed to have had back surgery to have Rods put in to take the pressure of my lungs but this wasn’t possible because of my condition the risk was too high! So I am having to have non invasive treatments to help relieve the pressure off my back and other therapies to help support my condition so I can live a better life.

This is were your support would be appreciated as therapies to maintain my health can be overwhelming and expensive to keep up with. I hope my story has been helpful.

Thank you for reading it.