Thanks for taking the time to visit my JustGiving page I am taking part in the London Nightrider 2014 for my niece Holly.

Hollys story

Hi my name is Holly and I am 6 years old. Despite all of my challenges I am a very happy, determined little girl.

I suffer from a rare metabolic genetic condition called Glutaric Aciduria Type 1. This condition was not screened for as part of the new born screening programme in the uk and I suffered a metabolic crisis in the early stages of my life. The brain damage has caused dystonia in all of my limbs which has made me unable to sit, stand and walk independently and I also have difficulties with my speech.

I now have to follow a strict low protein diet and follow a emergency plan when I am unwell and sometimes end up in hospital on iv fluids to prevent any further damage to my brain.

I attend my local mainstream primary school. I love going to school in my powered chair and have made fantastic progress in reception and continuing to do well in year 1. I love going swimming, horse riding and out on my tomcat trike.

There is no cure for my condition or the damage that has already happened. I have been making steady progress with my nhs therapies but please help me to raise money for the The Tree of Hope to receive private regular intensive physico, hydro therapy and additional essential equipment to help me reach my full potential. The additional therapies and equipment will help me to improve by strengthening my muscles, coordination, balance and independence.

 

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