GoFundMe set up to support Waterford teenager with SWAN

A GoFundMe has been set up for a Waterford teenager with SWAN (Syndrome Without A Name).

Portlaw’s Angus Roberts has lost his mobility, his speech and even his ability to eat because of SWAN, a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause.

The rapid deterioration of Angus' bones has left him unable to stand or bear weight. His condition has caused him to contract both liver and lung disease as well as causing him to regularly suffer from seizures.

The 17-year-old’s condition is sadly a life limiting one and as such he is receiving palliative care. Angus spends most of his time in a bed in the living room of their home in Portlaw. His mum Fiona and dad Nigel spend countless hours caring for Angus and seeking to maximise his quality of life. It is a full-time job as Angus requires tube feeding, oxygen and 19 medications per day.

Angus with his parents Fiona and Nigel.

Angus’ parents are calling on the public to help improve his quality of life. They wish to build a small extension onto their home which will allow Angus a space to call his own as well as shower and toilet facilities more suited to his needs.

It is becoming increasingly difficult for Nigel to carry Angus upstairs to get washed. “Angus is a young man who would love to have a space to call his own where his equipment and care could be more suitably homed. The council are willing to provide some of the funds needed, but there is a shortfall of approximately €20,000,” a statement on Angus’ GoFundMe page underlines.

“Fiona and Nigel have had their resources stretched in the process of caring for and loving their son, so we would ask that you give what you can to help them provide their son with the comfort and dignity this extra space will afford them.

The doctors don't have answers for the Roberts family, but at least, together, we can ease their burden somewhat.”

Support Angus here.