We would like to introduce you to three very brave little girls, Tantara 13, Ella 11 and little Freya 7.
What makes them so special….. Well they were all born with a rare genetic cancer called Von Hipple Lindau (VHL), their dad Allen also has the condition, and VHL has no cure and a life expectancy of just 55! VHL means that the girls have no tumour suppresser in their body and can grow tumours in the brain, spine, eye's and kidney's.
Please see Information about VHLto get to know the girls a little better.
About one in 36,000 persons are estimated to have VHL. Most individuals with VHL have an affected parent and other family members with VHL, but others are the first in their family.
Tantara started Tantara's wish in 2003 when her dad was diagnosed with a brain tumour and she wanted to help him, she started by having cake sales and in May 2003 raised her first £20.00. Just three months later she was given the devastating news that she also had the condition, this motivated Tantara more than ever to want to do more. In 2004 the first charity ball was arranged in her honour and it raised over £10,000.00.
Tantara's younger sisters have now also been diagnosed with VHL and they have thankfully taken on Tantara’s positive attitude, last year Tantara became active with VHL and has unfortunately grown 27 tumours on her eyes and this had lead to her nearly loosing her sight but she still continues to encourage her sisters and raise money for other families. The money raised by the family so far is £40,000.00 Tantara’s wish is to change what VHL means from “Von Hipple Lindau” to "Very Healthy Life"
In May 2010 Guardian Angel Events held a Spring Ball at The Shire Golf Club in Hertfordshire to raise money and awareness for Von Hipple Lindau Syndrome and we are pleased to say this was a very successful and fun filled evening with dancing, singing, silent auctions, live auctions and a raffle.
We hope to hold more events to raise further money and awareness for this very special cause. Please see Tantara’s Wish Spring Ball Album for an insight into the evening.