The parents of a child with an extremely rare condition have told how their daughter could end up 'frozen in her own body.' Little Lexi's mum and dad left a council chamber in tears when they learned they are one less hurdle away from building a house to protect their two-year-old daughter.
Knocks, bumps and even minor trauma such as injections could have a devastating impact on Lexi's health, as her body replaces broken muscle and tissue with bone. Her rare genetic condition called Fibrodysplasia Ossificans Progressiva (FOP), which affects around one in two million people, means she could become paralysed, and any injuries could speed up its onset.
After a planning case that began shortly after Lexi was born, the Hertfordshire tot and her family could soon move into a new bungalow complete with wheelchair access, a safe wetroom to prevent slips and falls, and a hydrotherapy pool which is "critical" to her treatment, HertsLive reports.
Speaking at a recent planning committee meeting on Thursday, April 13, Lexi's mum and dad told councillors their daughter's condition means "there is a possibility Lexi could be frozen in her body for over 30 years". Dad David Robins, aged 40, said: "We have embarked on this project out of love for our daughter."
Mum Alex Robins, aged 31, told HertsLive she is "grateful" council planning officers understood her daughter's medical needs. She said: "I am originally from Hemel and settled back here four years ago. We moved into our dream home - a cottage in Boxmoor - and we thought that was it. It was our forever home.
"Unfortunately, because it was a converted cottage when we learned about Lexi's heartbreaking condition, it became very evident very quickly that it did not suit the needs of our daughter. We need to make sure Lexi's body is protected from bruises and bumps. People who have FOP will have their condition start in different places, so you are constantly on the lookout for signs - and you're on the lookout for dangers all the time. We want to create somewhere that's really safe, and somewhere she will live not just while she's growing up, but for the next 30 years to come."
Neighbours of the new home, which will be built near Great Gaddesden, urged Dacorum Borough Council to consider the green belt impact of building a new house. A representation from Great Gaddesden Parish Council reads: "The Parish Council has the deepest sympathy for the applicants and recognises that considerable weight must be afforded to Lexi Robins' medical condition."
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It adds: "There is significant local concern at the erosion of the Green Belt, particularly given the long-term plans for the development of Hemel Garden Communities on the green belt to the east and southeast of the site." Some opponents questioned the need for a hydrotherapy pool. Alex said the nearest pool suitable for Lexi is in Stanmore, north London, and that her daughter has been on the waiting list for 18 months.
