“Imagine having a baby, realising something is wrong, and
receiving a diagnosis, only to be told by the Doctors that they don't know what
the future holds and can't answer your many questions.

Meet Sam, he is one such baby and at the age of 6 months
started having ‘infantile spasms’ a rare form of epilepsy. At 8 months, Sam was
diagnosed with a rare chromosome disorder, a partial deletion on chromosome 9.
So little is known about Sam's extremely rare chromosome disorder, that the NHS
was unable to provide any useful information to his family. Already dealing
with the uncertainty of Sam’s rare epilepsy condition and delays to his
development, the chromosome disorder diagnosis further compounded their
frustration as they struggled to understand the outcomes, needs and impact,
Sam’s condition is likely to have upon all of their lives. Through the information,
support and services offered by Unique, Sam’s parents are now better informed
and more equipped to deal with what lies on Sam’s journey ahead.

Further information on Samuel’s particular chromosome
disorder can be located here:

http://www.rarechromo.org/information/Chromosome%20%209/9p24%20deletions%20FTNW.pdf

Unique is the leading charity providing specialist
information and support to families coming to terms with a diagnosis of this
nature.  Amongst other things they provide a listening ear help service,
an information project for parents and professionals and a specialist database
for professionals providing care for patients. Theirs is a little known charity
funding a little known condition.

I am lucky enough to work with Sam's parents.  I am also lucky enough to be  taking part in an annual, international race across the
Atlantic in a 72ft Ocean going yacht.  The race commences on 20^th
November and should, with luck, end in St Lucia before the 12^th
December.  I'm hoping you will support this venture, and in turn Sam, by
donating to my page.

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.