After a normal pregnancy and delivery, Ruby-Mo was born to first-time mum Kiran in September 2010.

However, soon after birth, Ruby-Mo was taken to the Special Care Baby Unit as she was not feeding well and was continuously cold.

At five weeks old she had respiratory distress and had to be ventilated. This was the start of over 40 hospital visits over the next two years. When she was nine months old, Kiran and Paul were told their daughter had a genetic chromosome condition and she would not be able to live an independent life.

Kiran says:

For the first two years after Ruby-Mo was born I didn’t smile. I felt deflated and had no life whatsoever. I had to take each day as it came and couldn’t plan anything. Ruby-Mo was on oxygen 24/7 and every time she went into hospital I thought I would lose her. Everything was a constant worry and I couldn’t see how things would get better.

In November 2012, a home care nurse told Kiran about Haven House and the support it could provide. It took a while for the family to come round to the idea of visiting the hospice, fearing it was a place where children came to die, but Kiran now realises this is far from the truth. She says:

Ruby-Mo looks happy when she is at Haven House and I know the nurses are brilliant so I have peace of mind. I was able to go away for my 30th birthday for five days and totally relax. It really was the best birthday present; having some me time safe in the knowledge that Ruby-Mo was in expert hands.

Ruby-Mo has been coming to Haven House for day visits and overnight stays for over three years now and Kiran has got back her zest for life. While the demands of a child with such a condition means life is never going to be easy, Kiran is proud of Ruby-Mo and credits her for making her the person she is today. Ruby-Mo thrives in her music therapy sessions at the hospice and loves the switch-adapted toys that she is able to borrow through the hospice’s toy home loan service.

Kiran concludes:

Support is so important and that is what the Haven House nurses and other mums have given me. We truly would be lost without the respite care as it gives us that chance to be ourselves and have some kind of normality for a few hours. The hope and stability they provide keeps us all smiling.

Watch Kiran and Ruby-Mo in our Haven House heroes film