News & stories Stories Meet our families Meet Delilah Delilah has been using our services for more than a year and she really enjoys her day visits for respite care. From music therapy to messy play, Delilah loves to do it all at Haven House. Delilah, who’s 4, was born with an undiagnosed genetic condition classified as a SWAN (Syndrome Without A Name). She is severely disabled with complex needs and cognitively and physically impaired. Her parents, Marinella Gemma and Henry Alderson, knew something was wrong with Delilah soon after her birth, but they found it difficult to persuade the doctors. At four and a half months, Delilah was finally registered as a disabled child which came as a sense of relief for Marinella. She says: The first two years without support were very difficult. No one expects to have a disabled child and it has taken us a while to become a happier family. Caring for Delilah is a constant challenge. She has microcephaly - meaning abnormal smallness of the head. She cannot walk independently and is highly sensitive to touch and sound. She has recently had a PEG tube fitted to improve her feeding. When Delilah comes to Haven House for day respite care it means Marinella and Henry can have a short break from the demands of caring for an unwell child. Marinella says: Haven House is a lifeline to us. Delilah gets to do the things she enjoys and we can get support. It’s really nice to meet other parents and be part of a community. When Delilah is well she’s a very happy girl who enjoys laughing and making noise. She loves to be swung on the swing in the playground and explore the grounds. Delilah is visually impaired and she thrives on sound which helps her learn about the world around her. Along with physiotherapy, music therapy is one of the many services she accesses at Haven House’s Holistic Care Centre. Marinella says: Music therapy is so important for Delilah. She loves to bop her head from side to side and bang drums. The sessions at Haven House make her so happy. Delilah’s dad has also found support through Haven House’s Dad’s Group. Marinella concludes: Henry finds it useful to attend the group and meet other dads. They have a lot of empathy for one another and it’s great they are able to get support too. The best thing about Haven House is knowing that it’s a safe environment where Delilah can thrive and be happy. We are so grateful for everything the staff do. Read more of our family stories.