Little Girl Manages To Swim With Her Family For The First And Last Time
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A little girl who suffered from a one in 168 million condition managed to swim with her family for the first and last time two days before she died.
Four-year-old Evelyn Nolan was one of only 42 people in the world to suffer from her extremely rare condition. She had severe intractable epilepsy which led to brain damage after she was born on Christmas Eve 2011.
The poor little girl also suffered from global developmental delay, as well as holes in her heart and a reflux disorder.
The Mirror reported that she also required a ventilator to breathe for her. Her parents, Debbie and Elliot, figured that due to this equipment she would never be able to swim with them. However, the incredible staff at the hospital managed to adapt the ventilator so that they could swim.
Sadly, Evelyn died two days later after her parents realised that the illness was taking over. They made the incredibly difficult decision to turn off her life support.
One of the doctors involved, Dr Michael Griksaitis, said: "We are not aware of any previous cases of this happening in an intensive care setting, so to have given Evelyn and her family such a significant memory at such a difficult time means a great deal to everyone involved."
Her parents have now set up a fundraising page in order to start a charitable trust/foundation in their daughter's name. The page states: "Our Beautiful daughter, Evelyn Rose, touched so many lives in her short time with us. Born with an incredibly rare genetic condition that left her with profound epilepsy and global muscle weakness, Evelyn has shown us all the true meaning of strength. She surpassed every expectation. She fought throughout. She faced her troubles with grace, fortitude and determination. She was a truly outstanding little girl, her smile would light up a room, and the twinkle in her eyes will light up our hearts for a lifetime.[sic]"
RIP Evelyn Rose.
Words by Mel Ramsay