Believe me when i say i wish I'd never heard of a mitochondrial disease!

Mitochondria are present in every cell in the body, they are responsible for producing energy that the cell needs to function. When a person has a mitochondrial disease, there's not enough energy for the cells that make up the tissues and organs. 

There is a broad spectrum of symptoms and severity. But this is how Hope is affected:

 

Hope was born with 'catastropic' brain damage. We were told before she was born that she'd likely never walk or talk. 

Hope has epilepsy. 

Hope's muscle tone is far from normal. She can have floppy or stiff days.

This had led to her developing problems with some of the tendons in her legs shortening (the reason she is regularly in casts). She is at risk of scolosis.

Hope suffers with reflux.

Hope has a mini-gastrostomy. For those not in the know, this is a permanent feeding tube in Hope's tummy. She can and does eat and drink, but at times of illness Hope can go downhill really fast, and this tube allows us to keep her hydrated if she's not drinking enough. It is also a god send because of all the nasty medicines Hope has to take.

Hope can't eat a normal diet, she is on a special, very controlled medical diet called 'the ketogenic diet'. 

Hope is quite fragile and can get very seriously poorly very quickly, and we spend too much time in hospital. 

Hope's condition means that at times, high levels of acid can be circulating the blood stream. At worse, this can be doing damage to her organs, including her brain. At other times it may just be causing a constant dull ache in her limbs.

 

All that said, Hope is the most amazing, brave, inspiring person I have ever known. She is not defined by her condition, but her fighting spirit and determination and love for life and things she enjoys (animals, stories, swimming and music).

 

 The Lily foundation supports families like ours affected by mitochondrial disease.They offer moral support, assistance (financial and accommodation)  to families when their children are in hospitals long-term, they also provide short breaks to families.

More importantly, they fund ground breaking research, so that one day there might be better treatment or even a cure. 

 

I hope you are convinced that this is a very worthy charity, anything you can spare wil be gratefully recieved.

Thank you very much