A Sheffield mum whose baby daughter has an incurable syndrome is battling for her little girl to be able to eat.
Amy Lanera is making a desperate appeal for funds to take 19-month-old Reem Al Maamari to a specialist eating clinic in Austria to get her off the feeding tube which she is attached to permanently.
Amy, aged 33, said: “If she could experience food, it would be one thing she can take enjoyment from. It would mean the world to know she can get some pleasure out of life.
“Reem has got so much going off in her life. She copes with it well, but it’s upsetting that she will never experience things everybody else takes for granted.”
Reem was diagnosed with an extremely rare and serious condition called Marshall Smith Syndrome when she was 11 months old.
It has been diagnosed just 50 times in history and has a drastic effect on her body.
Her bone age is equivalent to six years, she has severe muscle weakness, difficulty breathing, is unable to crawl or eat and is prone to catching infections.
Amy, a mum of six from Arbourthorne, said: “When I was pregnant I felt something was wrong. As a mum you just know. When she was born I knew she didn’t look right either, but doctors assured me she was fine.
“It’s quite a scary and lonely position to be in because nobody knows anything about the condition. Only 50 people have been diagnosed with in world history.”
Amy said Reem is permanently attached to her feeding tube, is on a ventilator at night and has to attend around four hospital visits a week.
In her short life the Reem has had pneumonia, numerous chest infections and lumbar punctures – where a needle is inserted into the spine for tests – and has been in hospital ‘time and time again’.
As Reem cannot crawl she gets around the house by rolling and Amy said looking after her is a lot of effort for her and partner, Ammar, 35.
Amy, whose other children have no health difficulties, said: “Reem is my world and I want the best for her. She’s an amazing little girl who has changed my world.
“I just want Reem to have the best quality of life possible.
“I hope people donate so that my little girl can take pleasure out of something in life.
“She deserves that much at least.”
Amy is hoping to raise £20,000 for the treatment – which has a 90 per cent success rate – as well as the insurance and accommodation.
To donate, visit: www.gofundme.com/24xbz9g