Little Lewis

Here is another photo of little Lewis – When Lewis was born, he was diagnosed with a rare medical condition called Epidermolysis Bullosa (EB Recessive Dystrophic sub-type). The condition is very cruel and for Lewis this means that his entire body, i.e. eyes, mouth, intestines, organs and skin, are all fragile and perish easily.  Please take a look at the amazing work that DebRA Australia do, the charity for EB  http://www.debra.org.au and make a donation to help find a cure.

Sneak Peek – Lewis

I had the pleasure of spending my Sunday morning with the very special Lewis and his amazing mum and dad.  Here is a little sneak peek…  Please see below post regarding a very special cause – Butterfly Baby.

Butterfly Baby – Lewis – a very special boy

A very special family welcomed a beautiful baby boy, Lewis, into their family in December of last year. When Lewis was born, he was diagnosed with a rare medical condition called Epidermolysis Bullosa (EB Recessive Dystrophic sub-type). The condition is very cruel and for Lewis means that his entire body, i.e. eyes, mouth, intestines, organs and skin, are all fragile and perish easily. In the last fortnight alone Lewis has had blisters on one of his eyeballs and has had blood blisters rupture in his throat, all of this on top of the blisters that appear on his body on a daily basis. Unfortunately there currently is not a cure for EB. Cherie (Lewis’ mother), never one to sit around and do nothing, has taken onboard the National Fundraising role for DebRA Australia (the charity for EB http://www.debra.org.au) to help find a cure. There is research currently being undertaken at St George’s Hospital in Sydney, the professors and scientists are doing amazing scientific trials that look very promising for finding a cure in our lifetime. To fund the research, an awareness and fundraising day is being held on 28 October 2009 called Butterfly Day (similar to Daffodil Day, Pink Ribbon Day, etc). Every cent raised on Butterfly Day goes towards funding vital research to find a cure for people with EB, Lewis included. In terms of assistance for Lewis personally, Henry’s (Lewis’ father) soccer team have been kind enough to organise a fundraising event to help raise funds to pay for Lewis’ ongoing medical treatment and his trips to see the specialist multi-disciplinary team at the Sydney Children’s Hospital. The fundraising event for Lewis is a trivia / auction / raffle night on 31 October 2009. The prizes and auction items that have been generously donated for Lewis’ cause are fabulous (see below flier for details). Tickets cost $30 and all profits go into a Trust Account for Lewis’ ongoing medical costs. It would be fabulous if you could attend the fundraising event! Please contact the event organisers – details in the flier below if you would like to come or donate money. Thank you for taking the time to read this post, this is a really great cause. Your support will make a difference.