The parents of a young girl battling a life-limiting condition have issued an urgent plea for vital home adaptations to be carried out by a local authority.
Eight-year-old Manya Rezaei has a rare genetic condition, known as nemaline myopathy, which causes muscle weakness and means she requires 24 hour ventilation and is unable to walk or talk.
The condition is so rare she is believed to be the only child with it in the North East and her parents Soodeh and Farhad have been told she may live until she is 14 years old - but there is no guarantee.
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Manya is cared for by her parents at their home in Kenton, Newcastle, but Soodeh and Farhad have become increasingly frustrated as the bathroom in the property doesn't meet their needs, with their daughter now going weeks without a shower.
The youngster has outgrown the existing shower chair and they are unable to find a suitable alternative, with Soodeh and Farhead forced to drag their daughter through to the bathroom and wash her on a yoga mat.
They have been in talks with Your Homes Newcastle about having an extension built on the home so they can have a bigger bathroom which will allow them to wash their daughter.
But Farhad, 48, said the idea has come to halt due to costs. Farhad said: "It is her basic human right that she should be able to have a shower.
"She has outgrown the previous shower chair and the council hasn't given us an alternative.
"We have to carry her through to the bathroom, or drag her across the floor, and shower her on a mat on the floor.
"We had spoken to them about an extension and plans were drawn up but after months of chasing them they came back to say it was going to be too expensive."
Another property has also been discussed, but the couple are reluctant to leave the home where Manya has grown up and are also close to the Royal Victoria Infirmary (RVI) for emergencies.
Soodeh, 39, said: "We would prefer the extension as we prefer living in this area. We have lived here for seven years and this has been Manya's home since she was born which is why we really love living here.
"It is also close to the RVI which means an ambulance can be here in minutes.
"We have spent a lot of time chasing the council but nothing seems to be getting done about it.
"We want to have a suitable property that means our daughter can enjoy a shower more than once a month."
Jen Vinton, Group Director of Housing Services at Your Homes Newcastle, said: “When the Rezeai family were allocated their current home, the property met their needs.
"Unfortunately, as Manya’s health has continued to deteriorate, the property no longer meets those needs.
"We have spent a considerable amount of time reviewing all feasible options available to ensure that Manya and her family are able to live in a home which will give them the space and accessibility which they now require.
“One of the options we investigated was an extension, however, their current home is not able to be extended to provide the additional space required.
“We have discussed the option of rehousing with the family and made an offer of a larger, fully accessible property to them in September last year, which they declined.
"We are aware of the impact that their living situation is having and we are committed to finding a suitable home for the Rezeai’s.
"We will continue to support them and have a pre-planned visit on April 11 to further discuss their situation, until a solution can be found.”
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