Home changes plea for sick girl

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A couple whose daughter needs round-the-clock care say they fear £60,000 adaptations to their council home may not go ahead because of the expense.

Two-and-a-half year old Sienna Mason has breathing, feeding, heart, lung and developmental problems.

Her mother Natalie Pearson said experts had identified that Sienna needed to be cared for downstairs in their home in Boverton, Vale of Glamorgan.

The council said no final decision on the case had been made.

Sienna spent the first 12 months of her life in hospital after undergoing an emergency tracheotomy to ensure she could breathe when she was just six weeks old.

After a number of tests over the following months, she was diagnosed with the genetic condition Opitz Syndrome which causes malformations of organs and sees infants with the condition experiencing feeding difficulties.

Now Sienna must be fed through a tube and she is dependent on oxygen.

It would make life so much easier if these changes were made to the house Natalie Pearson

The rest of her time in hospital was spent trying to manage her condition and find a property suitable for her to come home to, said Ms Pearson, 27, who along with her partner Tom Mason, 40, cares full time for Sienna and her sisters Summer, six, and Seren, three.

The family were given the use of a rectory in St Athan, Vale of Glamorgan, by the Church in Wales in September 2007 but had to move out after six months because a vicar was moving in.

Vale of Glamorgan council then found their current council house in Boverton and Ms Pearson said the plan was to adapt it for Sienna using a disabilities facilities grant.

"An occupational therapist came to the house to assess it and said there were adaptations that needed to be made," said Ms Pearson.

"She needs a downstairs room with a special bed and washing and bathroom facilities as well as hoists to move her around.

"We also need ramps installed outside the house because I cannot get her outside on my own anymore. It means I'm virtually housebound and that's not fair on our other daughters. I have to rely on other people for help.

"Currently she sleeps upstairs which is next door to my other two little girls. Sienna has to have a lot of alarms and when they go off it means my other daughters don't get very much sleep.

"As a family we miss out on a lot."

Caring for Sienna is a 24/7 operation, her mother said

Ms Pearson said plans for around £60,000 worth of adaptations, including an extension to the house, were drawn up by architects and the family were accepted for the disabilities facilities grant last year.

However on 7 May, Ms Pearson said she was visited by council workers who said the family would probably need to move house.

At a second meeting on Friday, also attended by Sienna's care team, council representatives told the family they would not be paying for the adaptations, said Ms Pearson.

They told nurses who look after Sienna three nights a week, an occupational therapist and a disabilities team representative they could appeal against their decision and they would make their final decision in two weeks.

If the answer is still no, Ms Pearson said she had been told the council would give themselves 18 months to find them suitable accommodation.

"If we could afford to have a mortgage we would get a grant for changes to be made to our home," said Ms Pearson.

"The three nurses that care for Sienna have said they may have to withdraw the care package because it is becoming too dangerous to go up our stairs with her.

"It would make life so much easier if these changes were made to the house.

"The situation has caused so much stress and strain for the family. We thought the application had been approved but to have it taken away like this is heartbreaking."

'Substantial extension'

Mike Ingram, operational manager for Vale of Glamorgan council's public housing services, said the purpose of the visit earlier in May was to assess whether the proposed adaptations and alterations to the home were reasonable and practical.

"The council has recently changed the way it responds to tenants' requests for adaptations," he said.

"Since 1 April 2009 all requests are considered by housing staff who in the first instance consider whether the home is suitable for adaptation. If not, staff will discuss options including relocation with the help of financial assistance.

"Where we can adapt the home, housing staff will help tenants through the process and the council will meet ongoing repairs and maintenance costs of the adaptations.

"No final decision has yet been reached by the council in this particular case but the proposed works would require major internal and external re-modelling of the property including a substantial extension.

"The council will be in further discussion with the family, given the difficult issues involved, to find the most appropriate solution as soon as possible."