Saturday should have been a day of celebration - 1 year on
from the birth of our son Jamie. Whilst Jamie had many of the same needs as any new baby when he was born he had one major difference from most as he was born a SWAN - one of the Approximately 6,000 children who are born in the UK each year with a syndrome without a name (SWAN), a genetic condition so rare that it is often impossible to diagnose. 

Unfortunately in Jamie’s case this meant that he was always going to
face a number of challenges which required him to have regular hospital attention and which meant that his development was always going to be slower than for most children. However, Jamie faced that challenges before him with a strength and bravery that many of us would struggle to summon. The way that he continued to fight was an inspiration to everyone and something which made us as his parents so proud. Unfortunately, the challenges eventually became too much and he passed away in August.

So on his Birthday we celebrated Jamie. It wasn’t how it was
supposed to be because Jamie’s wasn’t there but he was right in the middle of it. He had such an effect on so many people in his short life and we want to keep that going by raising awareness and support for the other SWANs out there.

So as we celebrate Jamie’s first birthday we are raising money for SWAN UK which is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.