Thanks for taking the time to visit my JustGiving page.

A few weeks ago I had the privledge of meeting this little superstar Naomi and her amazing sister Bethany. The first thing I noticed about Naomi was her smile and sense of adventure, it was hard to picture just how difficult her life can be on a daily basis.

Naomi was diagnosed with Alternating Hemiplegia of Childhood (AHC)when she was 8 months old. This condition causes heartbreaking symptoms. 

Naomi can be paralysed for up to 2 days at a time. During her last paralysis she was in excruciating pain. She has also experienced episodes when her full body becomes totally limp and she is unable to lift even her head. Her speech can be affected when she has a paralysis, as can her swallowing. She has mild development delay which is accompanied by speech delay. She has low muscle tone and so finds staying upright so much harder than other children her age. When she runs, she cannot keep up with her friends and often falls over. She often struggles to climb the stairs. She has had small seizures in the past.

Naomi is on a high dose of medication to try to reduce the number of episodes she has. Despite all Naomi experiences with this condition, there are other affected children who have more severe symptoms.

AHC is extremely rare - 1 in a million children have the condition.There are approximately 60 children in the UK and Ireland with AHC.

As you can imagine Naomi's parents are desperate to find a cure.Currently research in the UK receives NO government funding and the research happening is done purely on goodwill and slotted in amongst related projects. Therefore only small projects have previously been carried out in the UK. However, very recently a 3 year project has been commenced in London. This aims to unpick AHC so that it can be better understood - the hope is that more specific drugs can therefore be targeted so that we can find a cure, or at least a much more effective line of treatment. Each year of this research project costs £50,000 to fund.

ALL money raised through this just giving page will be going DIRECTLY into the research here in the UK, and will also be used to help support families diagnosed with AHC. AHC UK (ahcuk.co.uk) is a not for profit organisation - they don't yet have charity status, because to do this they need to be consistently raising at least £5,000 a year, something which has not yet happened despite many efforts. AHC UK is run by parents of children with this condition.

Can you help? Every single penny donated is so very much appreciated. Together we can help give Naomi a life that other children experience. The chance to run and keep up with her friends, to excel in school, to be able to leave home,marry the love of her life, live independently, FREE from AHC. But to have any chance of finding the cure, money is needed for research
Thank you so much for taking the time to read this. I am truely grateful for any donations.

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