Single Mum of Children with Disabilities Seeks Help to Raise Funds for a Special Bath

Published on: 20 Aug, 2018
Updated on: 22 Aug, 2018

A single mum from Guildford is hoping people can help her raise funds to buy her daughter who has Rett’s Syndrone, and who needs 24-hour care, and son with autism, a special bath.

The call goes out to anyone who may be able to help, perhaps to organise an on-line crowd funding campaign, or with fundraising skills, and perhaps good knowledge of social media.

Single mum Iris Mukasa from Bushy Hill, Merrow, with her three children.

Trisha Stanton, a family support worker at Guildford Action for Families (The GAF), takes up the story.

She says: “Iris Mukasa is a single mum with three children. Her eldest child Kessie is 10 years old. She has a condition called Rett’s Syndrome, which has very many debilitating symptoms. She is unable to do anything for herself and requires 24-hour care.

“Her middle child, Troy, has autism spectrum disorder. He is essentially non-verbal, has ongoing sensory needs and ongoing challenging behaviour with no awareness of danger among other things. Her youngest child Niall is just three, and is well and healthy and full of energy!

“Iris and her children live in social housing in a specially adapted house in Bushy Hill, Guildford. Currently there is only a shower in the house. This is the problem!

“Iris wants a bath for the children, for a number of reasons:

• • The temperature of the shower fluctuates from hot to cold. This is despite the council saying they have fixed it. When showering Troy, she says he is constantly fiddling with the controls.
  • Kessie does not appear to enjoy the experience of being showered. Iris says it is like a battle, and she physically has to strip off and get into the shower with her daughter to manage the process. Kessie shivers and she finds having her hair washed particularly troublesome, and as it is afro hair, it takes time.
  • In their previous house there was a bath and Kessie found this relaxing, calming and therapeutic. She seemed to enjoy lying in the warm water with bubbles. Iris says her muscles relaxed, and when she was put to bed after her bath, she slept well.
  • Troy has sensory issues and Iris feels that a bath as opposed to a shower relaxes and calms him down before bedtime. Showering him down makes him cross and upset, she says. He emerges agitated before his bedtime.
  • At the moment Kessie is being bathed at her special school. This is not a residential school. They are doing this because Iris says she can not cope any longer.
  • During the holidays, Kessie sometimes has carers who come in to look after for her. They have also said how hard it is to shower her, and how much she appears to dislike it. The process is distressing for all involved.
  • For these reasons, Iris is desperate to get the shower replaced by a bath. She says the situation as it stands at the moment is intolerable, and mentally she is struggling to cope.

“She and I have spoken to the council who will not put a bath in on the grounds that a shower is sufficient for the needs of the children. The council’s occupational therapist has said the same. Indeed it may be sufficient, purely on the grounds of getting the children clean.

“This is a house that Iris says she wants to remain in long-term. Kessie and Troy are always going to have to be looked after. Iris wants to make their lives as comfortable and enjoyable as possible.

“The council have told Iris that they do not object to her getting a bath if she funds it herself. Iris is proactive and has looked into getting a bath installed and plumbed in.

“At a disability fair, she found a suitable bath. It rises and lowers, reducing strain on her back, and has a cover which makes changing and dressing Kessie simpler. She has been told by the children’s occupational therapist that once a bath is in place, they will then have an obligation to provide a hoist, etc. to transfer Kessie into it.

“The problem is, this bath is expensive! Iris has two quotes varying between £6,000 and £7,000.

“She has managed to save £500 towards the cost of it.

“We have approached various charities and their recommendation is the easiest and quickest way to raise this money would be through crowdfunding on social media.

Irish and her daughter Kessie.

“This is where I need your help! We are looking for someone to guide and support Iris through this process. A volunteer who is computer savvy or has done something similar would be perfect. Please can you help?

“Iris has a very small social network in this country. Her family all live in Uganda, where she says very few of them have access to the internet.

“She speaks good English but she says she lacks confidence.”

If you can help, contact Trisha Stanton on 01483 560003. Mobile: 07989 558625. email: trishastanton@guildfordaction.org.uk

Guildford Action for Families is based at Beverley Hall 71, Haydon Place, Guildford GU1 4ND.

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