Jude has an extremely rare life-limiting neuro-degenerative condition called Schinzel-Giedion Syndrome (SGS). He is one of only around 50 children worldwide to have been diagnosed with SGS. Jude has a very complex list of medical complications and is entirely dependent on family and carers for all his needs. Jude has hearing and visual impairments and a severe developmental delay. He is unable to support himself, has little head control and is not able to swallow effectively. He receives his nutrition through a permanent feeding tube directly into his bowel. Jude suffers from epilepsy as well as a range of digestive, urology and Orthopaedic problems.
Jude is a calm and patient child who loves to be at home surrounded by his family, friends and carers. He likes to be close to people and enjoys massage and soft touches that reassure and comfort him. He enjoys sensory stimulation with lights and music and loves to listen to his older brother, Fraser.
As Jude has grown, our family home has become unsuitable for Jude. He now needs a downstairs bedroom and bathroom to enable him to be properly cared for at home. His current bedroom and upstairs bathroom do not provide adequate enough space to be able to move and handle Jude safely. He has become too heavy to be safely carried up and down the stairs. Jude needs to be able to receive his personal care in a safe and hygienic environment with the proper equipment to enable safe lifting with a hoist and hygienic bathing in an adapted wet room.
In order for Jude to be fully involved in family life, he needs level access to the rest of the family home. We would like to be able to care for Jude together, rather than our family being split into different rooms.
The proposed adaptations will also enable us to accommodate Jude receiving an increased level of respite care within the family home from professional carers. The rest of the family will maintain privacy upstairs, whilst Jude can be cared for downstairs independently - thus allowing us to have some quality rest.