A 12-year-old with the UK’s only known case of a rare genetic condition risks breaking her fragile bones every time she’s carried up and down the steps to her Clerkenwell flat, claims her mother.
Aaliyah Smith, of Papyrus House, has primordial dwarfisim and mosiac trisomy 15, a “chromosomal anomaly” characterised by impaired growth and heart defects present from birth.
Aaliyah’s single mother, Jeyda Yusuf, has to carry the wheelchair-bound child down 42 steps to get to the communal door because the “lifts have been broken for three months”. Now she’s urging her housing association, Peabody, to relocate their family to a ground floor property.
“She’s the only child in this country to have the condition,” said Jeyda. “And doctors don’t know much about it.
“This year her health has started to deteriorate: my daughter has scoliosis and her spine is twisted and 50 per cent to the right, so she has to wear a back brace.
“I’ve been carrying her down the stairs but it’s causing more trauma to her. She has low density bones, they could start breaking.”
Aaliyah, who attends Richard Cloudesley Secondary has two younger siblings: Kaiya, eight, and two-year-old Anaya.
They are also affected as Kaiya needs to watch Anaya while their mother carries Aaliyah up and down the stairs. They are often late to school and nursery as a result.
“My back is going,” said Jeyda, who is studying to become a police detective. “And I’m her prime carer. It’s so stressful. I just want to be on the ground floor so it’s accessible for her.”
The family have also had problems with heating and hot water.
A Peabody spokesperson apologised and said conractors were now fixing the lift.
They said: “Ms Yusuf tells us she is happy with her home but does need to move to a ground floor property as a matter of urgency. Unfortunately we were not aware of this previously, but have now contacted Ms Yusuf and helped her to register for a move. In view of the family’s circumstances we will be expediting this and offering additional support in the meantime.”
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