Rural hospice heartbreaker
Children’s palliative home struggles amid frequent power outages
ONE of only three children’s hospice centres in South Africa, and the only one in KZN, Butterfly Palliative Home in Ingwavuma is fighting for the survival of its young residents.
Enduring prolonged blackouts, which last year led to the death of a toddler patient, the centre’s owners, Christoff and Tarryn Bell, have reached their wits' end and want to #HoldEskomAccountable.
“As with all the children at Butterfly Palliative Home, Lulu, who sadly passed away last year during a week-long blackout, was receiving end-oflife care.
“She was oxygen dependent and, because of the power outages, we could not provide oxygen consistently and had to rush her to and from hospital regularly,” said Tarryn.
“This stress alone was
unnecessary for a child who we would ideally want to keep as comfortable as possible, given her condition.
“She passed away on the morning of the opening ceremony of our 12-bed children’s hospice facility.”
Tarryn said, this was when they reached a point of confrontation with Eskom.
“The Eskom employee who came to tend to the problem threw his keys down in frustration and I picked them up and held on to them, and told him I would not give them back until our electricity was restored,” said Tarryn.
The problem was resolved, albeit temporarily, and to date, the home is subject to hours-, sometimes days-long power outages apart from loadshedding.
“We were kindly donated a solar system by Nura Energy in Hluhluwe after that, but we now need to increase this,” said Tarryn.
Four of the 12 children at the home are presently on oxygen.
With no government funding, relying solely on donations and sponsorship, the centre cannot afford to run generators all the time.
“It’s difficult enough doing what we do without government support, and it irks me that we are forced to act like activists and fight for basic services.
“We cannot have another death.”
Butterfly Palliative Home
The centre was started in 2017 with the Bells’ first adopted child Ncami, who sadly passed away at the age of two.
She was Down syndrome and had a heart condition.
Baby Si then came along in 2019, and was estimated to be six months old when he arrived from Soweto.
He had been found in some bushes, and was diagnosed with Edward’s syndrome.
He lived at the home, which wasn’t on its current premises, until he passed away at the age of four.
Two years ago, the Bells bought the land with a dream to build the hospice.
A year later, prayers were answered and the facility was built thanks to numerous generous donations. It was officially opened last year.
“We believe every child needs to be in a loving family,” said Tarryn.
Tarryn is a social worker and Christoff is a doctor at Mosvold Hospital, and tends to the hospice children after a full day’s work.