Malachi’s story: “Caring for Malachi is a continuous job”
Mum of four Sylvia was pushed to her limits when Covid-19 hit. She was providing 24 hour care for her six-year-old son Malachi while facing health concerns of her own.
Malachi was diagnosed at six months with Vein of Galen Malformation (VGM), a life-threatening condition that occurs during pregnancy and results in abnormal connections between blood vessels within the brain.
Malachi’s twin sister, Amelia, was born healthy without VGM, but her twin brother needed highly complex surgery to save his life. Tragically, Malachi suffered a brain injury during his operation and afterwards remained in a coma for two months.
Sylvia and Dad, Walter, had to quickly come to terms with the fact that their son, who had previously been like his twin sister, would require specialist care for the rest of his life.
“I was trapped inside 24-hours a day”
“After returning home from hospital with Malachi, I couldn’t leave the house. I was trapped inside 24 hours a day. Caring for Malachi is a continuous job. It takes a lot to keep him comfortable.”
“Malachi is having to learn everything again. He finds it difficult to swallow, cannot talk or walk, and is on a lot of medication to manage his secretions.” Says Sylvia.
The family were referred to Haven House in January 2016 and started using their Toy Home Loan service which provided free use of specialist toys. Malachi was visited by the care team at Haven House, who would arrive with new toys and help to provide some interaction for Sylvia and Walter, who are housebound due to Malachi’s complex needs.
But what they desperately needed was respite care for Malachi. In November 2016, the family begin to stay overnight at Haven House, allowing them to spend valuable time together. Malachi benefits from wonderful services such as sensory play, music therapy and yoga. His older sister Sapphiah and brother Isaiah also attend a sibling support group, hosted by Haven House.
“Haven House is inclusive and incorporates Malachi’s family into his life which is wonderful. Whilst there are things which limit his ability, it’s important for him to know that we are all together as one family.”
Sylvia explains how Haven House has been a lifeline for her family “The hospice has supported us thoroughly during COVID and more importantly during times of crisis and when we have had nowhere else to turn. We are very grateful for the respite service as without this we would not have a break. Malachi needs 24hr care and he has lots of different health needs. We as a family are under extreme pressure every day.”
Pushed to the Limits
There are no limits to what Haven House children’s hospice will do for families like Malachi’s.
But right now, hospices like Haven House are being pushed to their limits. More and more families need their help – and that’s why we need you to push yourself to your limits by fundraising or making a donation directly today.
Will you push yourself to your limits, so children’s hospices aren’t pushed to theirs?
#ChildrensHospiceWeek
