How a hospice is making dreams possible for an exhausted family

To be able to have a place where you can have up to four stays a year represents a reality which otherwise would not have been possible and one that we could only have wished for.

Busi, Thabani's mum

Thabani, 7, has a rare chromosome imbalance, which has given rise to global developmental delay. He cannot walk, talk and is fed via a tube.

In his short life, Thabani has undergone many operations. These include a tracheostomy to help him to breathe, hip surgery and major cranial surgery to alleviate the pressure on his brain.

Mum Busi describes him as a sociable boy with a big personality who loves cuddles.

At any one time, Francis House has around 500 families receiving some form of care. Statutory provision of respite care is minimal in many cases, and Francis House provides support for parents who care for their children twenty-four hours each day, seven days per week, often at the expense of their own health.

Caring for a child with complex medical needs can put a huge strain on families. One or both parents often must give up work to become full-time carers.

They become experts in the care of their child. Every day without a break they go through a never-ending timetable of daily medicines, suction, feeding and pad changes – all in addition to caring for their other children and daily life.

The family, including Thabani’s dad Omphile and older brother Wandile, have been coming to Francis House for respite care for almost a year.

Busi explains: “There are days that you just don’t sleep, and you still have to carry on. Sometimes I can put Thabani to bed and he decides he doesn’t want to be left alone. You can’t leave him, or he’ll start coughing and is at risk of having a chest infection, so you have to stay with him.

“Sometimes it’s an hour or two hours before he settles. If between four o’clock and six o’clock I have not had a chance to eat, I’m not going to eat until nine o’clock and then I have to prepare for the next day.”

“When we first came to Francis House, I can honestly say it was amazing. We came together as a family, and I can’t begin to tell you how Francis House has made possible what we could only have dreamed of."

“We now leave Thabani in their care to get some respite for a few days. It was challenging at first, to leave him, but for those times it means that I don’t have to worry.

“To be able to have a place where you can have up to four stays a year represents a reality which otherwise would not have been possible and one that we could only have wished for.”

For more information visit Francis House