Thanks for taking the time to visit our JustGiving page.

Naomi is 7 years old and has an older sister, Bethany,10, who is truly her best friend. Naomi is a very funny little girl, she is kind and caring, she thinks about her sister in all situations. She is affectionate and loves  cuddles. She adores My Little Pony and loves our dog! She enjoys going to the pool, horse riding, having stories read to her and being outdoors.

Naomi was diagnosed with Alternating Hemiplegia of Childhood (AHC)when she was 8 months old. This condition causes heartbreaking symptoms. AHC is not a condition that children grow out of - the "childhood" part of the name just means that they become symptomatic before the age of 18 months.

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. As parents of this beautiful girl, this is just breaking our hearts to see our little Naomi suffering. Despite all Naomi experiences with this condition, there are other affected children who have more severe symptoms. AHC is often considered to be a progressive condition, so there is no guarantee Naomi will stay as she is for the rest of her life, and it's likely that her condition will worsen in time. AHC has proved to be fatal for a number of children/adults in recent years.

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

We 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 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 us? Every single penny donated is so very much appreciated. We long to 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, we need money for research.

Thank you so much for taking the time to read this. We are truly grateful for any donations.