Three-year-old Malachi was diagnosed at six months with Vein of Galen Malformation (VGM), a life-threatening condition which occurs during pregnancy and results in abnormal connections between blood vessels within the brain.

He also has an arterial heart defect. Malachi had no symptoms of VGM prior to a scan and the diagnosis came as a massive shock to parents Sylvia Nyamaah and Walter Bartolomeu who live in Ilford.

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.

Just when it seemed that Malachi would never regain consciousness again, he did to the delight of Sylvia and Walter. The couple now had to come to terms with the fact that their youngest son, who had previously been like his twin sister, would require specialist care for the foreseeable future.

Sylvia says:

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.

The family were referred to Haven House in January 2016 and started using our Toy Home Loan service which provides free use of specialist toys. Visits by our play co-ordinators who arrive with new toys help provide some interaction for parents who are housebound with a child who has complex needs, but what Sylvia also needed was some respite care for Malachi.

Sylvia explains:

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.

Sylvia began using Haven House for overnight respite care in November 2016.

She says:

When I visited Haven House I knew this was a place which would give Malachi the very best care, and look after him with dignity. The care is personalised and the staff listen to you. They make sure he gets all the things which can keep him well.

Along with respite care, Malachi accesses our full range of services and activities, including sensory play, music therapy, physiotherapy and yoga. Malachi’s older sister, Sapphiah, and brother, Isaiah, also attend Buddies, our sibling support group.

A highlight for the family is our annual Summer Fair, which is always an exciting day where Malachi can play with his siblings in our specially-adapted playground and explore the grounds.

Sylvia says:

Malachi is a lovely boy with a nice smile and he’s very gentle and calm. When he’s at Haven House he can chill and do all the things which he loves”.

She concludes:

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.

Read more of our family stories