Hattie Melody was born with a rare Chromosomal syndrome called Wolf Hirsch-horn Syndrome. This affects many parts of the body including low muscle tone, global developmental delay, epileptic seizures, heart defects to name just a few.
Hattie is visually impaired and is prone to glue ear but doesn’t let these things get in her way.
As part of this syndrome Hattie suffers from drug resistant epilepsy meaning she can have up to 30 seizures a day when medication is not working.
She is also fed over night via a feeding tube which needs constant monitoring but requires the safety of an enclosed bed.
Hattie has already overcome so many obstacles and continues to amaze professionals with her development however she is still met with daily challenges and requires down stairs living with an adapted wet room, a safety bed and open plan living area so she can be observed at all times, but be able to have her own independence in a safe environment fit for her needs.
It is heartbreaking for us as her parents to not be able to give her all that she needs in order to thrive and enjoy her own space so that we can be confident she is safe in her surroundings.
Helping us provide this safe space for Hattie to grow would mean so much to us all as a family, not only would it provide Hattie with the safety she needs it would also mean we could take part in her play and development and enjoy moments which most families can take for granted.
Hattie is a happy little girl with a cheeky personality, she loves to be with people and will often shout ‘hello’ to anyone she see’s. She loves playing with her sister. She always takes everything in her stride, you never hear her complaining and is the first child to get messy with any activity.
Hattie loves to be read to and always asks for more when reading stories.
Hattie doesn’t have many dislikes but if she is having a bad day then she needs to be very close to her mummy and doesn’t like being left alone.