We came across this heart-touching story of terminally-ill 03 year old Lola Bloomer and her mother Jo on the web:
03-year old Lola Bloomer is terminally ill, suffering from a terminal genetic disorder, Ataxia-Telangiectasia, or A-T, an incurable condition that causes increasingly severe disability and premature death. But her mother Jo has pledged to make her daughter’s life as full as possible and give her some unforgettable experiences in her short life.
Most children who suffer from this condition are healthy for around 2 years, but then their balance and coordination begins to deteriorate, and by the age of 10, many are forced to be bound in a wheel-chair and have full-time care. The condition also affects the immune system, resulting in frequent chest and lung infections and high risk of leukaemia and other cancers.
The devastated mother says everyday is like waiting for a time-bomb to go off, but she is determined and positive that as long as its possible, Lola will have a fun life! ‘I want to be able to take her to Disneyland and do all the lovely family things while she can still enjoy them. It’s my dream to take her to see the 07 wonders of the world.’
Mum to 03 year old Lola and 12 year old Will, she adds, ‘It’s going to be a rollercoaster but I’m ready for it. Our lives are not going to be ruled by Lola’s condition – I need to keep life as normal and enjoyable as possible for as long as possible for the sake of both my children. People ask me how I cope and I tell them I just have to get on with it – I’m a mum. Lola is so beautiful and has so much character, she really is a special soul. She loves her dollies and cooking and she’s really maternal but knowing that she will never be a mother, get married or have children is one of the hardest things of all. The little life she does have needs to be as special as possible, but life doesn’t always allow for that. If I could afford to I would spend life making sure Lola’s life was as enjoyable and enriched as possible. I now realise the importance of the saying ‘live everyday like it’s your last.’
Their family friend has pledged to raise £100,000 for Lola by arranging an event called the Mega-Tri, which will see 20 men and women as far away as Ireland, Singapore and France come together to embark on a mega-triathalon in aid of the A-T Society in April 2013.
If you would like to donate to Mega-Tri for Lola, visit http://uk.virginmoneygiving.com/team/lolabloomer