A family from Milton Keynes have started a charity to help fight a rare childhood disease.
As a baby Hollie Carter, who is eight, was diagnosed with Niemann Pick Type C. Sometimes called Childhood Alzheimers, it is eventually fatal.
Her family has set up the Hope for Hollie Foundation to fund research, and to support other children with the condition.
After Hollie's devastating diagnosis aged just two the Carter family's lives were turned upside down, but grief soon turned to determination.
Helen has devoted the last six years to raising awareness and vital funds and has just registered a charity. The Hope for Hollie Foundation to provide funding for research, support services and offer grants for specialist equipment.
Hollie's condition is so rare only one thousand others are known to suffer from it worldwide - and remarkably of just one hundred cases in the UK, three are in Milton Keynes.
Seven-year-old Joshua was also diagnosed in 2008 - the families have travelled to America together fundraised together and have become firm friends.
17-month-old Zayn was just 12-weeks-old when his parents were told he might not live to see his second birthday. Meeting Helen and Jodie and seeing how Hollie and Joshua are still leading normal lives has given mum Nadia a renewed hope for Zayn.
Without a cure once the disease starts to take hold it is known to be aggressive attacking motor skills, speech and the ability to eat food. Children can develop dementia and seizures and will eventually lose their lives, many in their teenage years.
Helen hopes to raise enough awareness and money to bring drugs currently being trialled in the US over to the UK. It could take many months perhaps years.
Ultimately they have each other and they cling onto hope - but what these three families do not have is time.
Click below to watch an interview with Professor Paul Gissen from Great Ormond Street Hospital:
If you would like to find out more about Hope for Hollie Charity click here