Hi, I’m Amy, mum to an incredible little girl called Rowanna.

Rowanna has a rare genetic condition called CTNNB1 and unfortunately sits at the most severe end of the affected children with the disease. She is almost 4 years old and weighs a tiny 9kg due to her inability to tolerate feed. She is on a palliative care pathway and has been through and tolerated so much in her short life. There is nothing medically we can do for her, only treat her symptoms and try to keep her as pain free as possible. You’d think that was easy …. But sadly for her and many other children like her, the NHS constantly fails to meet her needs or when they do meet them, we wait months and months, leaving her in unnecessary discomfort and severe pain. It breaks my heart, as a mum, not being able to help her or have the funds to buy everything she needs, when she needs it. Everything associated with special needs is incredibly expensive.

I am campaigning for change and trying to get her voice heard, for her and for all the other families in this position.

At the moment, I am trying to self fund a medical bed so I can care for her safely at home and to minimise the pressure on her spine and pertruding coccyx that rubs and bruises her skin just from lying on it.

If you can help with anything at all, as a family we would be incredibly grateful. Grateful beyond words.

Thank you so much for visiting our page and reading a little of our story.

Amy & Rowanna