Sarnelli House currently has four severely disabled children under its care. All four live at the House of Hope nursery. The children are three girls and a boy and are aged 13, 4, 3 and 2. The oldest girl is Mina and she was born with HIV. As a result, she developed a brain infection in her first few years and is cerebrally damaged. Mina is blind, unable to move her limbs and bed bound. She is fed by a bottle with her food pureed as she is only able to suck, rather than chew. Mina arrived at Sarnelli House ten years ago and had repeated fevers and infections. It was thought unlikely that she would survive but here she is, entering her teenage years, strong and healthy. Je Je was 4 in June and was referred to us when she was one month old. There were issues at her birth and her brain was denied oxygen for a period, resulting in serious complications for the little one. On top of that, Je Je’s mother was a drug user during her pregnancy. Je Je suffered from repeated seizures in her first few years until they were controlled by medication. Sadly, she has had almost no developmental progress over her four years and she is unable to walk, talk or feed herself. She has swallowing difficulties as well so is fed with a bottle too. She can eat a little from a spoon but it is always a challenge. Je Je is able to clap her hands and loves sound.
Sandy is a few months younger than Je Je. Her mother drank heavily during her pregnancy and had no interest in taking her newborn home with her. Sandy’s brain was also deprived of oxygen at birth, and she cannot walk or talk either. Sandy struggles to hold her head up and is startled by sudden sounds and is sensitive with strangers. She can however eat when spoon fed and is able to drag herself along the floor with her arms. Sandy is the most communicative of the four children living with disabilities. Tony came to Sarnelli House when he was four months old. He will turn 3 in September and is the most dependent of the four. Similar to Je Je and Sandy, Tony’s brain was deprived of oxygen at birth, and he spent the first two months of his life in the hospital ICU, during which time he had to have his heart restarted a number of times. Tony is fed by a tube through his nose as he cannot suck or swallow. He does not have control over his movements and can be jerky and tense. His weight and height are well below average and he is the most cognitively compromised of the four children.
Thanks to generous sponsors, three of the four children now have an up-to-date wheelchair with special and adjustable supports for them to sit up properly and be taken for walks. On top of that, they are all regular visitors to Sarnelli House’s newest attraction, the Snoozle room. It was the idea of Ben Ummels, who, with his wife Angelique, has been visiting Sarnelli House as a volunteer for over 15 years. Ben is an assistant physiotherapist from the Netherlands and he and Angelique developed the idea of a sensory room for the four disabled children. They spend most mornings there, with all four kids each receiving 30-40 minutes of physio, massage, relaxing music, and other sensory stimuli. Sarnelli House has paid for the room to be adapted with lights, mirrors, cushions, and other materials to support the project. All four of these kids have tense muscles and joints, from their cerebral problems and from a lack of general movement in their daily lives. Their regular sessions in the Snoozle room help to ease some of these tensions and most of all, it allows some one-to-one care to be given to the children. In the chaos of Sarnelli House, and particularly the busy House of Hope, there are few opportunities to give children that kind of attention and the gang of four can only benefit from this. There is a low ceiling to how much developmental progress can be made for these children, but Ben and Angelique are devoted to their care and there have been some inroads made in their physical and emotional responses. Most of all though, it is the time they are getting in a calm and gently stimulating environment that is of use to these precious children. It makes us think how much some of the more able-bodied little ones would benefit from such attention.
We are grateful to our sponsors for the wheelchairs and giving Sarnelli House the ability to purchase the equipment for the children and of course to Ben and Angelique for their time and effort. These children are very loved at Sarnelli House and the extra attention they receive in the Snoozle room is further example of that.
