Most of you are now 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. 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 “
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
Since last years ball myself , Matt , Aaron and Laura and gang was lucky enough to be invited to attend this years convention. All I can tell you is that it was such an eye opener it has made me want to make this years ball even more of a success.
The charity have to raise £40,000 at least a year to fund the convention and be able to support families world way living with MOPD.
EVERY PENNY COUNTS
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
