Tommy needs his own bedroom and bathroom
Donation protected
Tommy is almost 5 years old. He has a rare form of dwarfism called sedc and as had a tracheostomy it situ since being 3 weeks old after a traumatic birth where he wasn't breathing for the first 16 minutes of life.
He was born in the summer of 2017. He spent the first 7 months of his life on three intensive care wards.
He was diagnosed with a brain injury called HIE from lack of oxygen at birth, he had a trachestomy (artifical airway) at 3 weeks old and feeding tube at 4 months old.
He requires a fully trained competent adult with him full 24/7. Which we do between ourselves (our choice) and we don't have any nurses or carers looking after him at home.
He as achieved so many milestones which we didn't think he would, from being able to be off the ventilator day and night now.
He doesn't tolerate a speaking valve but yet he has still found his own way to be able to talk. He has also had two operations on his cleft palate at a year and two years old.
He can scoot along the floor on his bottom to get to places around the ground floor of home.
He has a motorised buggy for him to get around outside as he is not able to walk himself as he has bilateral talapies, which has currently relapsed and become worse which now needs surgery to attempt to correct this.
Recently he has started feeding himself orally but still has his feeding tube to gain his full nutritional and calorie values.
Tommy is having to sleep in the 'living room' due to needing a specialist hospital bed and breathing machinary including ventilator, oxygen, humidifier and a large amount of medical supplies.
Tommy is soon to have spinal surgery to stabilise his neck stability to hopefully prevent the risk of future paralysis or even death in the event of a fall.
We applied to the council for the housing adaptations in March 2018. There was a lot of red tape to go through to get the council to accept the building works.
However, unfortunately the costs of the adaptations are more than the allocated amount that the council grant covers.
This is why we are trying to raise the money for the extra costs of the build, the decorating and carpeting his rooms.
Please help by donating and sharing this post as much as you can so we can get him the privacy, accessibility and independence he now needs.
He was born in the summer of 2017. He spent the first 7 months of his life on three intensive care wards.
He was diagnosed with a brain injury called HIE from lack of oxygen at birth, he had a trachestomy (artifical airway) at 3 weeks old and feeding tube at 4 months old.
He requires a fully trained competent adult with him full 24/7. Which we do between ourselves (our choice) and we don't have any nurses or carers looking after him at home.
He as achieved so many milestones which we didn't think he would, from being able to be off the ventilator day and night now.
He doesn't tolerate a speaking valve but yet he has still found his own way to be able to talk. He has also had two operations on his cleft palate at a year and two years old.
He can scoot along the floor on his bottom to get to places around the ground floor of home.
He has a motorised buggy for him to get around outside as he is not able to walk himself as he has bilateral talapies, which has currently relapsed and become worse which now needs surgery to attempt to correct this.
Recently he has started feeding himself orally but still has his feeding tube to gain his full nutritional and calorie values.
Tommy is having to sleep in the 'living room' due to needing a specialist hospital bed and breathing machinary including ventilator, oxygen, humidifier and a large amount of medical supplies.
Tommy is soon to have spinal surgery to stabilise his neck stability to hopefully prevent the risk of future paralysis or even death in the event of a fall.
We applied to the council for the housing adaptations in March 2018. There was a lot of red tape to go through to get the council to accept the building works.
However, unfortunately the costs of the adaptations are more than the allocated amount that the council grant covers.
This is why we are trying to raise the money for the extra costs of the build, the decorating and carpeting his rooms.
Please help by donating and sharing this post as much as you can so we can get him the privacy, accessibility and independence he now needs.
Organizer
Tracy Hibbert
Organizer
