Angus Roberts is a 17 year old SWAN (Syndrome Without A Name) patient. The lack of definition of his affliction sadly doesn't reduce the severity of his situation. In the past few year his degenerative condition has seen Angus lose his mobility, his speech, and even his ability to eat. The rapid deterioration of his 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.
Angus's condition is sadly a life limiting one and as such he is receiving palliative care. His Mum Fiona and Dad Nigel spend countless hours caring for and seeking to maximise Angus's quality of life. It is a full time job as Angus requires tube feeding, oxygen, and 19 medications per day. Currently Angus spends most of him time in a bed in the living room of their home in Portlaw, Co. Waterford and it is an improvement in these circumstances that leads us to ask for your help.
Fiona and Nigel 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 increasing difficult for Nigel to manage carry Angus upstairs so that he might be washed and of course 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 approx €20'000. 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.
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