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Ella is off on a holiday of a lifetime! This is why we love what we do!
Ella is 5 years old and has White Sutton syndrome, a rare neurological disorder. Ella is non mobile, non verbal and nil by mouth. She suffers from drug resistant epilepsy and currently has up to 100 seizures a day. These have caused her to regress and the few milestones she had achieved have disappeared.
The family are unsure at what rate this regression is going to continue, along with her life expectancy due the health deterioration and complications caused by this.
Ella really loves Disney and so we have decided that they need to make some fantastic memories and so we are sending them on a fantastic trip to Disneyland Paris this October.
Ella’s mum Samantha said
“We are so over the moon to receive this fantastic Disneyland Resort Paris trip from Red Eagle. It’s just so appreciated!
We don’t know what lays ahead for our daughter Ella, with her frequent seizures leaving less and less of her and her health deteriorating. The financial consequences of caring for a child like Ella just don’t allow us to make the most of our time together as a family and make each day count.
In giving us this amazing trip, we are going to bank some magical memories with our girls forever”
White Sutton syndrome is a rare disease and the prognosis is unknown, but Ella’s symptoms are on the severe end of the spectrum, with the addition of epilepsy and and increased risk of SUDEP (sudden unexplained death in epilepsy)
This trip will help Ella and the family as they make each day count.
A big thanks to CA Drillers Ltd for helping this dream come true.
