Please buy an on line Butterfly for our Children and help us to raise money and awareness of this terrible genetic disorder.  Raising money will allow the Charity to pay for diagnostic tests, raise the profile of this disorder and out-reach nurses to help and support our families.  Additionally the Charity will be able to continue hosting events where families access support, information and have the opportunity of meeting medical clinicians who are experts in this field.

For those of you who are unfamiliar with Cockayne Syndrome – where shall we start .... CS is a premature ageing disorder that leads to a shortened life expectancy.  There are varying degrees of syndrome, types I, II and III.

 Eventually, most patients will show similar signs, including (among other features of lesser importance): growth failure, microcephaly, developmental delays, movement disorders (such as tremors and/or rigidity), orthopaedic complications (including scoliosis, kyphosis, and/or joint contractures), easy sunburing, hearing loss, a pigmentary retinopathy, and  most importantly a severe progressive neurological deterioration.  Not all patients develop all of these complications.  The cause of death is most frequently a pneumonia, which is probably due to the progressive neurological problems as opposed to an immune system deficiency.  The effective coordination of swallowing and breathing is required to avoid aspirating materials into the lungs as is a good strong cough reflex to clear secretions from the airways as this will assist in the avoidance of developing a pneumonia. 

Each child has a loving and happy nature despite the problems they have to contend with on a daily basis. Amy and her friends will reach out and capture your heart.  You will never forget these special children once you have met them.

Having spoken to parents of this terrible illness it is apparent that each family is filled with sorrow for a life that will be shortened. For some, help never comes, but all our children bring meaning to our lives and the simple joy that is found in each one of their smiles, a touch or even a step that has been taken is a blessing.

This is the world of Amy and Friends - WOW what lives they have had!  So share it with us and understand our Cockayne world.Thanks for taking the time to visit my JustGiving page PLEASE BUY A FABULOUS GLITTERING BUTTERFLY which we can place on one of our trees around the country.

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 and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.