An 18-year-old woman has died after living with an extremely rare disease that saw her effectively trapped in the body of a child.
Elena was in hospital surrounded by her family at the end of her life.
In 2016, she was diagnosed with a rare genetic disorder called NUBPL mitochondrial disease.
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Typically people with the disorder have problems including seizures, intellectual disability and ataxia – a neurological condition that describes a lack of muscle coordination, resulting in clumsy movements.
Elena weighed very little and struggled to grow.
And due to complications caused by the disease, many of her organs did not function properly.
According to the Journal of Medical Genetics, there have only been 18 known cases worldwide, as of 2020.
Elena had the only known case of NUBPL in her home country of Italy.
Just four days ago, on 7 February, Elena’s mum Andreea, updated her online followers on her situation as she spent time in hospital.
And while there is no treatment for NUBPL, the message radiated positivity, as reported by Need To Know.
“You are our life – mine and your dad’s,” Andreea said.
“Keep on fighting, princess.
“First day of targeted care, gone.
“Tomorrow we start again towards a bright smile like yours, you will conquer it again.
“Keep going, as you know how to do.”
On 9 February, an emotional message was shared alongside a photo of Elena smiling.
“Elena, darling I want to remember you with this smile,” the caption reads.
“Now you will be singing with angels.
“Your family will love you forever.
“One day we’ll see each other again.”
Her followers were devastated and quick to leave messages of love and support.
Elena died at a hospital in Genoa, the city where she lived with her mum, Andreea, dad, Paolo Delle Piane, brothers, Daniele and Luca, and her youngest sibling Vittoria.
Her funeral took place today (11 Feb) at the Evangelical Church of Genoa.
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