From the age of six months, Aiza has been a regular and much loved visitor to Haven House.

Now aged ten, her condition means that she needs constant care so the hospice plays a vital role in supporting her family.

Soon after birth, Aiza was diagnosed with a very rare metabolic disorder, causing severe neuro-developmental delay. She has many medical conditions including visual impairment and scoliosis. Aiza wears a body brace and uses a wheelchair. Her mother Mariam gave up her job to become a full-time carer but was fortunate to be referred to Haven House shortly after diagnosis. Mariam explains,

Thanks to the support from Haven House staff, I’ve never felt that I needed to have carers at home. The respite it offers us enables my husband and I to do things that most families take for granted, like going to the cinema or on holiday abroad.

The family has enjoyed many of the services Haven House offers. Before starting school, Aiza and Mariam were regular fixtures at the weekly pre-school sessions and Mariam attends the parent coffee mornings, giving her a chance to talk to others who understand their situation.

With poor vision and limited movement in her hands, Aiza responds particularly well to music and sound. Aiza also enjoys feeling different textures which, combined with a story, help her to visualise, follow and understand. Aiza can’t communicate verbally but she laughs and signs to communicate. She loves tickles but will roll her eyes if she is not feeling up to it!

The family also use the toy home loan service, which lends out specialist toys and equipment to families in their own homes.

Aiza also stays at Haven House for respite care, where she enjoys Asian dance music as well as taking part in music therapy sessions. Last year, Aiza stayed at the hospice the day before her sister’s wedding, allowing Mariam to help with the preparations. On the day itself, staff at Haven House got Aiza ready for the wedding; one member of staff even made her a pair of princess shoes. She went to the wedding and then returned to Haven House after a few hours so her parents were able to enjoy the celebrations knowing Aiza was happy and safe.

Thank you will never be enough, says Mariam. I hope we are always lucky enough to have Haven House as an extended family.