Maxine was referred to Haven House when she was at a real low point. At the time she had no outside family support and was bringing up two young children in her dad’s loft. That’s hard for any lone parent – especially if one child is seriously unwell.

Maxine’s son, Kai, has cerebral palsy and spastic quadriplegia. He cannot walk or mobilise independently and uses a wheelchair. Kai also has epilepsy, resulting in multiple daily seizures and cortical visual impairment, meaning he is blind.

With so much of her time spent caring for Kai, Maxine found it very challenging to do basic things such as take her daughter, Aisha, to nursery and simply play together as a family. She would have to travel long distances for Kai’s hospital appointments and being the main carer was emotionally and physically draining. Maxine says:

Kai didn’t sleep, neither did my daughter, I found doing the normal things outside of all the appointments hugely challenging.

Through Haven House, Maxine found support for Kai, Aisha, and also herself. Music therapy has meant that Kai now shows greater interaction with the outside world. He has learnt to sing along to the opening lines of his favourite ABC song and has started to form new sounds in an attempt to say words such as hello; something Maxine was told he'd be unlikely to do.

Music is increasing his motivation to use his hands to play and explore, which was originally a huge challenge for him given his physical disability.

Maxine says when Aisha realised Kai was different, that he never would be able to play in the same way as other children or communicate, "it came as a real shock to her". But through ‘Buddies’, Haven House’s sibling support service, Aisha can make friends with children who know what it’s like to have a brother or sister who will never be similar to them.

The support Maxine receives through respite care for Kai has also allowed her time to meet other mums who have children with life-limiting conditions. Maxine says:

Don’t let pride take over. I did that for quite a long time. Asking for help is not a bad thing. Haven House is a great place to get that help.