Meet Jaida 7 year old Jaida Offorjinda has been at Richard house for two years. She suffers from congenital malformation syndrome a birth defect resulting in disabilities and CHARGE syndrome (Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness), a genetic disorder. Here’s what her mum Olivia, had to say: We joined Richard House two years ago and the lockdown hit soon after and so we were able to access remote, music therapy for 10 weeks. This involved half an hour session on a weekly basis. Music therapy really helped Jaida and the family as at the beginning of the pandemic we felt that there was no plans or consideration from the government to help children with complex health needs. We were just advised to shield and that was as far as the advice went. Music therapy meant that my daughter had something to look forward to every week and it lifted our spirits as a family. Loneliness and isolation effects families/careers of children with life-limited illnesses as it is often felt that there is no support available, but Richard House offers the support we need. Just to have someone there who understands is so beneficial for your wellbeing. Loneliness has often caused the wellbeing of families who have children with complex health needs, to deteriorate. The pandemic was a good example of the lack of awareness surrounding families who have children or members with complex health needs. We felt forgotten, the only advice we were given by professionals was to just shield and there was no further information about what support was out there, we just felt shut off from the world and was trying to do the homework ourselves. Consideration from the government wasn’t taken with regards to how we would be feeling, it was all a bit the unknown at the beginning of the pandemic, no one knew what life would be like. We came across Richard House and the National Deaf Children’s Society and decided to see what support was out there and available. It was these charities that kept reaching out to us. For us, Richard House offered weekly music therapy sessions for my daughter and, family events and arts and crafts via zoom. This including remote music therapy sessions made us feel part of the world again. There is no typical day of care with my daughter, but it is never a case of waking up in the morning and going with the flow, we always plan our days. During the first lockdown she had a tracheostomy which required continuous suctioning, and I was working from home at the time also. On a bad day she may require 10 suctions an hour, on a good day it may be 2 or three. You spend a lot of time suctioning, cleaning the tube, factoring lunch and snacks, it can be quite full on at times. On top of that, she needs medication and supervision involving following her going up and down the stairs to make sure she is safe. On top of this we needed to monitor her tracheostomy to ensure it didn’t become dislodged and to prevent decannulation. Music therapy is something my daughter enjoys and she got use to seeing someone on the end of the screen each week. It really did cheer us up and knowing that she was doing something she was enjoying. Through it, she was able to communicate and express herself. The care we receive from Richard House is the best thing about the hospice, just knowing someone cares and wants to help. The staff are amazing, from the first visit we were made to feel very welcome.