Pippa Atkinson suffers from an incurable genetic disorder which causes her skin to break out in painful blisters when touched.
The poor toddler, who is nearly two, is forced to take morphine, paracetamol and sometimes sedatives to relieve her from the painful effects of her epidermolysis bullosa.
But things are looking up after a group of builders offered to build an £8,000 extension for the family free of charge, WalesOnline reports.
Mum Rhiannon said they were "blessed" with the offer, which will mean Pippa will be able to access the kitchen in a wheelchair if necessary.
She said: “It’s a similar concept to DIY SOS. We’ve got 40 people coming from as far as Dundee coming to give up their time and put a roof on for free."
The extension could be life-changing – for Pippa and for her family who live in Ponthir, Cwmbran in Wales.
Mum-of-two Rhiannon added: “For Pippa it means her bedroom will be a nice place to be.
“At the moment we are doing her dressings in the bedroom so her anxiety level goes up in the bedroom because she never knows what is going to happen.
“When she has the extension the dressing area will be in the bathroom which will be a designated area.
“So she can enjoy having a bedroom rather than thinking being in there will be the worst part of the day.”
Pippa, who was born missing 90 per cent of the skin on her hands and her feet, can get up to 50 blisters a day – some in her mouth.
One of Rhiannon’s jobs is to lance blisters on Pippa’s feet by cutting them with scissors because they grow so quickly.
Pippa's condition is said to be among the ten most painful in the world, and its sufferers are known as "butterfly children" because of the fragility of their skin.
Band of Builders founder Addam Smith started the project in 2016, when he was inundated with offers to help landscape his friend's garden after they were diagnosed with cancer.
The group now exists to help those in the area in need of help, through asking tradespeople and local companies to donate their time and skills.
Rhiannon added: “I think she will appreciate all this as she grows up she will look back and see all the people who have gone out of their way to help her.
“We have been blessed to have all these people help.”
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