A six year old girl, who touched the hearts of hundreds with her happy go lucky nature, has lost her fight against Batten Disease.
An outpouring of grief is being posted on social media for Effie Hadman, whose adventures were recorded on a Facebook page set up by her parents to raise awareness about the disease which has a life expectancy of 12 years old.
Carly and Paul Hadman said on their page: “Our hearts have been shattered into a million pieces.
“Snuggled in her mummy and daddy’s arms, our beautiful Effie Rose let go of our hands and took those of the angels this morning.
“She can now dance, sing, play and share her infectious giggle with everyone up there.
“Fly high princess, we were so lucky to have you in our lives, if only for a short while xxx”
Effie was a bright little girl running around having fun until the age of two and a half when she suddenly developed seizures.
She became forgetful and clumsy and eventually lost the ability to walk and talk.
As the disease progressed she was unable to swallow and had to be fed through a stomach tube.
Last week she stopped breathing twice and her family prepared themselves for the worst as she began palliative care.
The family said then that: “We have the lights dimmed and Effie’s favourite Disney music playing, in the hope of keeping Effie as relaxed as possible.
“Please pray for comfort and peace for our princess, as she takes the next step on her journey with Batten Disease.”
The couple set up used stamp collection boxes around the Fens to raise funds for the Batten Disease Family Association, to find a cure for the rare terminal disease, which saw Effie go downhill rapidly in less than a year.
Batten’s is caused by a genetic fault, which means the child is deficient in an enzyme which removes waste from the brain. The waste builds up and brain cells die.
Children lose all of their abilities, need frequent suctioning and become completely blind, demented and bedridden.
When the stamp collection was launched Carly said: “Effie was a bright, bubbly girl until for no apparent reason she suddenly forgot all of her numbers, colours and people’s names due to mental regression. She started suffering seizures.
“In January 2014, when Effie was three and a half, we received the devastating news that she has late infantile batten disease which has a life expectancy of five to 12 years old.”
Carly and her husband Paul are carriers for the rare disorder. The one ray of light is that their younger son George does not have the disease - he was six weeks old when they discovered Effie was terminally ill.
On receiving the devastating news the couple sold their home in Leicestershire, gave up their jobs and moved to a bungalow in Whittlesey close to where both sets of parents live.
The family said it was important to make the most of the short time with Effie by creating treasured memories for them and for George, which included a trip of a lifetime to Disneyland Paris, thanks to a charity called Magic Moments.
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