Close this Window cccc Penny and the Lowe Syndrome Charity Penny and Rod Video Appeal.wmvPernny
I know I am one of many that realise how lucky we are to have good health and find it overwhelming when you think of all the different charities that need help, especially those that need vital funds for research towards cures for incurable and debilitating disease. Having a healthy growing child as I do, my heart goes out to the parents with the challenges of young children with life threatening illnesses like Lowe syndrome.
Lorraine is one of them and I met her and her lovely son Oscar, five years ago at a theatre stage performance that I was appearing in. It was back stage that she told me her story that left me speechless. The positive side was that she had the courage and determination to fight this disease and set up the charity, Lowe Syndrome Trust, that now helps raise funds to fight Lowe syndrome, a genetic disorder that effects boys like her son with multiple, physical and mental handicaps.
I remember those first precious moments holding my son Alastair in my arms, thinking he was the most perfect thing I had ever seen and all that I wanted to know at the time was ‘is he okay, is he healthy’. Lorraine was told her son had a hole in his heart!! and two days later told he had to be operated on immediately to avoid blindness.
As each month and year of Alastair’s life goes by, I watch him grow to become stronger but for Loraine it was the opposite.
Oscar‘s health deteriorated and with many hospital visits was told his life expectancy was not long. It wasn’t until he was five that he was diagnosed with Lowe syndrome and that it was incurable.
It was three months later that Loraine set up the Lowe trust charity and it is now the main charity in the world funding medical research but is still a very small one, compared to many other charities out there.
Oscar now aged 14 was diagnosed with glaucoma last year and most recently while receiving speech therapy was diagnosed as autistic. His mother considers Oscar to be one of the luckier ones to have survived this long. Most of the children with Lowe disease are very severe and don’t live into their teens with symptons affecting the brain, eyes, kidneys, bones and muscles.
Each year I do my bit but that is just the tip of the iceberg and they need much more help in raising awareness and most importantly raising vital funds. If the trust can double the amount of funds, a cure can be found.
These tough economic times that face us right now make it even harder for those families supporting children like Oscar, as their needs are greater. So please help in any way you can, as every little bit helps!! Not only does your support help research into this diseases that effects innocent children out there, it may God forbid be needed by someone close to you one day.
The trust is just about to organise a 10 th year anniversary at the beginning of 2010 and Sponsorship would be appreciated! (www.lowetrust.com).