Wiltshire Publications

Family hope to give disabled teenager her own private space

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A WESTBURY family are trying to raise £5,000 to allow teenager, Josselin Tilley, who has complex medical needs, to have her own downstairs bedroom and bathroom. 

Josselin, 13, has a rare genetic condition called Charge Syndrome. This has left her profoundly deaf and blind; unable to communicate; unable to walk and uses a wheelchair; unable to eat,  so she is fed via a tube; has to be cpap ventilated at night; has scoliosis and osteoporosis; and is prone to seizures amongst many other conditions.  

The Tilley family are now aiming to raise £5,000 to help create a private space within their house for Josselin.

Lee Tilley, Josselin’s father said, “Now she is 13,  nearly 14, she desperately needs a proper bedroom,  along with her own bathroom, that will give her her own privacy. The current situation is that she sleeps in our dining room. When she needs a bath, which can be anything up to 4 or 5 times a day, she has to be taken upstairs as she is non-mobile, undressed on the landing outside her 15-year-old brother Alex’s room, as the bathroom is too small, then transferred into the bath and when finished in the bath, back onto the landing to be dressed. 

“With the money raised we would like to give Josselin the ground floor, which is  currently a lounge with utility room. We will turn the lounge into her bedroom and the utility room into her own bathroom. Wiltshire Council will fund a portion of it ,including a stairlift, but we have to find the remainder. 

“In order for works to start we will have to remove some of the kitchen to fit our washer/dryer in as we will not have a utility room any more, so we will need some kitchen units and worktop. 

“We need to widen the front door as Josselin’s wheelchair scrapes both door and wall as she comes in the house, so we will need a new wider PVC front door. 

“Any help towards making this happen will be greatly appreciated. 

“We have had offers of help from local tradesmen labour wise, so need to purchase materials, fixtures and fittings to complete the job.  Maybe there are some local companies that could help with the materials? 

“Alternatively, we have set up Josselin’s gofund me page, anything you can give will help to make this happen for her: www.       gofundme.com/f/josselins-wet-room-amp-new-        bedroom-adapta tions.”

To follow Josselin’s journey via her Facebook page, run by her family, https://www.facebook.com/helpjoss/.