'We don't have time to waste': Parents create 'bucket list' of dreams for daughter, 2, as she battles terminal brain disease
10:24 GMT, 22 May 2012
Holding baby Olivia for the first time, proud mum Claire Penney looked forward to watching the tiny tot grow up.
But two years later, Claire and husband Gary have had to come to terms with knowing their daughter will not live long enough to enjoy a full life.
Little Olivia was diagnosed with rare Alexander Disease nine months ago, one of just 50 children in the world to have the brain condition.
Brave: Toddler Olivia Penney, two, has only between five and ten years to live as she suffers from the rare brain condition, Alexander's Disease
Living her dreams: Olivia's parents Claire and Gary (centre), pictured with the toddler's brother Samuel (left) and sister Nicole (right) have drawn up a list of 100 things to do with their daughter before she passes away
Now Claire, 34, and Gary, 33, are determined the rest of Olivia's short life will be filled with as many happy memories as possible.
They have created a 'bucket list' of 100 things they want her to do before she is snatched away from them.
Claire said: 'We do not have time to waste. We want to do as much as we can with her why she is here so we created the bucket list to achieve as much as possible.
'We want to organise a princess party for our little princess. Travel to Lapland and visit Father Christmas and play in the snow. There is so much we want to do.
Wheels in motion: Olivia has already accomplished some of the goals on the list, such as riding a bike (above)
'She has already achieved some of the goals which is fantastic. She has ridden a bike for the first time for example. Our main goal is to take her to Disneyland in Florida. She loves all the characters and it would be a dream to see her there.'
Tiny Olivia, two, has a life expectancy of between five and ten years.
Heartbroken Claire added: 'Olivia was diagnosed with Alexander Disease in August last year. She had been poorly since she was born but mainly since she was seven-months old.
'They thought she had meningitis and she had an MRI scan which came back abnormal. We went to the doctors after she kept having seizures.
'You do not know what tomorrow will bring with Olivia. It is hard to plan for the future because we do not know what will happen with her.
'She could have a seizure or become ill quickly and then you are back in hospital for months on end.
'We just do not know and have learnt to not look to far in the future and spend as much time as we can with her while she is with us.
'The doctors have told us it will be very unlikely Olivia will make it into double figures in terms of age.
'The saddest thing is everything Olivia does now and has learnt, she will forget over time because that is was Alexander Disease does.'
Tragic Olivia, who has a sister Nicole, 16, and brother Samuel, 13, will start nursery soon, but Claire's ambition is to see her first day at school.
Rare disorder: Olivia, pictured with her parents (left) and her brother Samuel (right), is one of only 50 people in the world to have the condition
Claire said: 'If you saw her in the street you would not know she had the disease. She is like any other normal child from the outside.
'I take her out and she is great with everyone. She does not speak but we have a type of sign language we use to communicate with her.
'Olivia likes to get involved with the other children. She gets frustrated because they are running around and she cannot do that.
THE STUFF OF DREAMS: SOME OF OLIVIA'S TO-DO LIST
1. To visit Peppa Pig World
2. To meet the animals at Marwell Zoo, Hants
3. To travel to Lapland to meet Santa, have a husky ride and play in the snow
4. To meet Minnie Mouse at Disneyland Paris/USA
5. Watch Olivia ride a bike
6. Go sledging in the snow for the first time
7. Take her first unaided steps
8. To take Olivia to her first day at school
9. To give a birthday party worthy of a princess
10. Take Olivia on a girly shopping trip
11. Meet giant tortoises face to face
12. To teach Olivia how to swim
13. To watch her on stage in her first school play
14. To swim with dolphins
15. Teach Olivia to fly a kite for the first time
16. Take Olivia for dance lessons
17. To have a Christmas in a house big enough for the whole family
18. Raise awareness for Olivia's condition
'She does everything a normal two year old does. She is bright as a button and bosses her older brother and sister around, ruling our house.'
Claire gave up a teaching assistant job to look after Olivia full-time and dad Gary works from their home in Southampton, Hants, as an estate agent to spend as much time with her as possible.
Olivia's condition is so rare, doctors did not know what was wrong with her until Claire and Gary were finally told the heartbreaking news.
Claire explained: 'Doctors have told us there is only around 500 people in the entire world with Alexander Disease but just 50 with the infants version of it.
'The rarity is so extreme. There is nothing known about it at all. There is a few people we know of, one other person in America we keep in contact with.
'It is a genetic disease. It is to do with white mass around the brain. There is no cure.
'It is devastatingly to know at some point this disease will take hold of her. Not knowing is the hardest thing to come to terms with.
'It is something you dream will never come to your family but we are living it every day. To say we are living for today is an understatement.
'We are determined to make each memory in each day count. Inside our world is collapsing around us but Olivia needs us.
'She needs us more than ever and we have to make sure her childhood is as normal as possible why she is still with us.'