Rare Disease Day

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Our little boy was born rare in June 2018.
He was born with Charge Syndrome which varies from child to child but most Charge children spend a lot of time in and out of hospital with their medically complex needs. 

Sebastian spent the first 4 months of his life
in hospital (intensive care & neonatal surgical) and since being released in a September 2018 we have spent a further 5 weeks under the care of Warwick and Birmingham Children’s.

Birmingham Children's Hospital saved our little boys life more than once and we will be eternally grateful. 
Spending so much time in the wards, around the hospital and building relationships with other parents you truly appreciate what this amazing institution does for children and their families. 

Please help us celebrate Rare Disease Day, Sebastian and all the other charge families we have come to know as our extended family but raising money for Birmingham Children’s so they can continue their amazing pioneering work. 

The Hospital has an international reputation in areas such as liver transplantation, cardiac surgery and neonatal surgery. 

Thank you x