Most of you are aware that our friends little boy Patrick was born with a very rare form of Microcephlic primordial dwarfism...... since meeting others with this condition I have grown a love for everything that Sue and John the charity founders have done and continue to do for these families. Since last years ball we have sadly lost one of the Children supported by this charity and have also gained a new child who has recently been diagnosed with the condition in the Kent area. As friends we would like to help the charity reach there annual goal as much as we can.
Here is a little snippet of info about Patrick from his mum Kerry herself.....
“Microcephlic Primordial dwarfism is an extremely rare condition affecting around just 500 individuals world wide. Patrick Michael Gill is 1 of 8 children worldwide diagnosed with MOPD XRCC4 which is a gene type under the MPD umbrella. Patrick was diagnosed at 4 months old with Microcephlic primordial dwarfism and then his gene typed was discovered shortly after his second birthday. He was the first XRCC4 to be found. Patrick is 5 years old, weighs just under a stone and wears 9-12 months clothes. We would have never had this diagnosis without the help of walking with giant foundation. They help fund the research that goes into finding these genes. Families all over the world will be forever grateful for everything they do for us. We get together once a year to meet all the families affected internationally. This week every year is so life changing! It's overwhelming to be with children like Patrick, like a sense of belonging. We can't thank you all enough for helping raise funds for this amazing cause x “
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