Suitable housing for Shauna

Aunts who care for Shauna seek council help

Shauna Wallace.

The family of an eight-year-old girl with a rare chromosome disorder that sees her with no mobility has this week appealed to Athlone Town Council to provide them with a house that is appropriately adapted to meet the child's needs.

Shauna Wallace was born with the features of a condition known as Diploid-triploid mosaicism. While tests have so far proved inconclusive, Shauna's family explained this week that her doctors have said that Shauna displays all of the features of this condition and believe she will test positive for it at some stage, but due to her cells changing the diagnosis has not yet been confirmed.

What it means for Shauna is that she has no mobility, no pelvis, is missing one of her kneecaps and has a prosthetic eye on her left side. She also has some webbing between her fingers and toes and other features of the condition include obesity and developmental delay.

At the young age of two tragedy struck for Shauna when her mother Lisa Wallace passed away. Since then Shauna has been cared for by her aunts on both sides of her family - Louise Quinn and Maureen Lee. Louise is Shauna's primary carer, caring for her during the week, while Maureen provides respite care for Shauna at weekends.

Before Lisa passed away she had been on the council's waiting list for a house that suited Shauna's needs and for the past five years Shauna's aunt Louise has been on the list for an appropriate house for Shauna.

She explained this week that the council previously offered her a house in St Anne's Terrace, but this was where Shauna's mother Lisa passed away and she also felt it was too far away from her own family, who offer support and live in Sarsfield Square.

More recently Louise had been under the impression that she was to be offered a house closer to her family and also to Shauna's school - St Mary's NS - but this fell through and now she has been told the housing department won't see her until September.

Louise, who is living in a rented house at present, said this week: "There's no space for her in this house with the wheelchair for her to get around. I can't get the hoist around and I'm lifting her. I'm lifting her into the bath as well. We need a walk-in shower."

She added that there is also a step into the house where she lives at present, which makes it difficult to get Shauna into and out of the house.

Maureen added: "It's just the little things to give her what she needs."

Shauna uses a specially moulded wheelchair to ensure that she is sitting in the correct position and her aunts explained this week that due to Shauna's condition, her life expectancy can be extended if she is kept in the best possible health, which involves exercise and adequate housing conditions for her needs.

She is also due to get a new wheelchair soon. She received her current wheelchair two years ago and it had been expected that it would last for four years, but Shauna is growing quicker than expected.

Shauna receives physio every week, but Louise explained she does not have the room at home to do the exercises with Shauna. Her only exercise is pushing herself in her wheelchair, but she is unable to do that in her current house as the garden is inaccessible for her.

Shauna also needs a specially adapted shower, as at present Louise has to lift her into the bath and Maureen has some difficulty getting her into the shower in her own house, which may need to be adapted further.

"If Louise gets injured, or I do, there will be nobody to lift her," said Maureen.

As Shauna gets older, she is getting bigger and obesity is also a feature of her condition, and her aunts are worried they won't be able to lift her for much longer and are now appealing to the council to provide a house that adequately meets her needs to ensure she is as comfortable as possible.

They would ideally like a house near to St Mary's NS and Louise's family in Sarsfield Square, explaining that they would like to keep Shauna in mainstream education for as long as possible, but when she is no longer going to St Mary's, she will attend St Hilda's, which is also in the area.

"It's been recommended that she stay in mainstream for next year," explained Maureen. She added that everyone involved in Shauna's care meets every six months to discuss her case. This includes family members, as well as Shauna's social worker, occupational therapist, physiotherapist, teacher and resource teacher. Maureen added that the people involved in Shauna's care have written to the council on her behalf, but to no avail.

Maureen added that Nicky McFadden had been working on Shauna's case when she was a councillor and Gabrielle McFadden is now working on their behalf.

"Everybody is doing what they can but they get to go home and close their doors. It's 24 hours for us," explained Maureen.

Shauna needs round-the-clock care. She can eat herself, but everything else her aunts do for her. They say they want to give Shauna the best quality of life possible, which involves adequate accommodation close to her family support network and her school.

Shauna, who is a member of the IWA's Sunshine Club, enjoys the club meetings once a month and loves music. She is a big fan of High School Musical and had the opportunity to attend High School Musical on ice with the club, which she loved. As she can't hold a pencil, Shauna uses a computer to do her homework and also uses it to paint pictures, another pastime she enjoys.

Her aunts would love her to have a house and garden where she can whizz around in her wheelchair herself, a house where she can have her own bedroom and proper bathroom facilities and where there is room for her equipment and space for her to do her physio exercises.

When contacted yesterday Athlone Town Council was unavailable for comment at the time of going to print.

Cllr Gabrielle McFadden said yesterday afternoon that Shauna's needs were what was at stake and pointed out that her health is suffering because she needs equipment to do exercises to help her and does not have the room in the house she is in for this equipment.