Butterfly Palliative Home is the first and only registered children’s hospice in rural KwaZulu-Natal, South Africa, where end-of-life care is provided to young children with severe disabilities and life-limiting conditions. Founded in 2018 by Tarryn and Christoff Bell.
History Of Butterfly Palliative Home
According to Tarryn” she and Christoff began their journey with palliative care in 2012 when they met a little girl with Down’s Syndrome, named Ncamfile, who lived in a local orphanage.
“She spent the first year of her life in hospital after her mom died from AIDS-related complications during childbirth,” Tarryn explains.
At the orphanage, Ncamfile fell ill and was in and out of the hospital, where Christoff treated her in the pediatric ward. Tarryn says they arranged with the orphanage that Ncamfile would spend weekends with them. “We didn’t feel ready for kids yet, but we felt we were being called to help her,” she says. Six months later, Ncamfile died in Tarryn’s arms due to heart failure.
Tarryn and Christoff were heartbroken but they knew their journey with palliative care was just beginning. In 2018 the couple received a phone call from a child and youth care center in Benoni, Gauteng, where they adopted their son Joshua in 2015. The Center asked them if they would be interested in Sibusiso.
Because Joshua has Down’s syndrome and autism, the center thought they would be a perfect fit for Sibusiso, or Si, as he was affectionately called. According to the Center, Sibusiso was estimated to be six months old and was nearly dead when he was found, He was also dehydrated, emaciated, and in a horrible condition. Although they were hesitant at first, they still ended up adopting him.
According to Tarryn when baby Sibusiso arrived he wasn’t able to feed and was fed formula milk with an eye dropper. They were also told by a specialist he would die before his first birthday. Sibusiso had facial and palate deformities. He also had epilepsy and severe scoliosis, which lead to his lungs twisting around his spine. Because of this, he struggled to breathe on his own after catching a cold and had to be placed on oxygen. But after just a few days, he died.
To keep their son’s legacy alive Tarryn and Chrisoff started Butterfly Home, which cares for six children and employs 12 caregivers.
In 2022 Tarryn and Christoff officially launched a 12-bed hospice facility for children.
How the Home is being Funded
Tarryn and Christoff rely on the goodwill of people to keep Butterfly Home’s doors open. At first, they used Christoff’s salary as a doctor to pay for the caregivers’ salaries, but are now able to get by on donations. They also have an online charity shop where income made from every purchase goes to support the needs of the home.
You can also donate to support their cause, purchase from their online charity shop, or learn more about their work by visiting their website Butterfly Palliative Home
