Durban — One of the only three children’s hospice centres in South Africa and the only one in KwaZulu-Natal, the 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 hold Eskom accountable for putting the young patients’ lives at risk.

Tarryn said, as with all the children at the Butterfly Palliative Home, the young *Londi* died last year during a week-long power blackout. Londi was receiving end-of-life care and was oxygen dependent, and because of the power outages, they could not provide her with the life-saving oxygen consistently and had to rush her to and from hospital regularly. Londi died on the morning of the opening ceremony of the 12-bed children’s hospice facility.

“This stress alone was unnecessary for a child, who we would ideally want to keep as comfortable as possible, given her condition,” Tarryn said.

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 that I would not give them back to him until our electricity was restored,” Tarryn continued.

Tarryn Bell, co-owner of the Butterfly Palliative Home, Ingwavuma, holds on to Eskom’s vehicle keys after a frustrated Eskom employee who came to look at the power outage problem dropped them. Picture: Facebook

According to the centre’s owners, the problem was resolved, albeit temporarily, and to date, the centre is subjected to hours, sometimes days-long, of power outages apart from load shedding.

“We were kindly donated a solar system by Nura Energy in Hluhluwe after that incident, but we now need to increase this renewable energy’s capacity to accommodate the whole centre,” Tarryn added.

She further said four of the 12 children at the home were presently on oxygen.

With no government funding and relying solely on donations and sponsorship, the centre cannot afford to run generators to provide energy all the time.

“It’s hard enough to do what we are doing 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 at the home, all because of these incessant power cuts,” said Tarryn.

The centre was established in 2017, with the Bells’ first adopted child *Thabi*, who sadly passed away at the age of two, Christoff said.

He added that the little girl had Down's syndrome and also suffered from a heart condition.

“Then baby *Sandi* 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 with us at the home, which was not on its current premises, until he passed away at the age of four,” Tarryn added.

Two years ago, the Bells bought the land with a dream to build the hospice.

A year later, their prayers were answered and the facility was built, thanks to numerous generous donations. It was officially opened in 2022.

“We believe every child deserves to be in a loving family,” Tarryn stated.

Tarryn is a social worker, and Christoff a doctor at Mosvold Hospital in Ingwavuma and tends to the hospice’s children after a full day’s work at the hospital.

*Not their real names

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