We will love and lose them again and again…

Translated from original article written by Jacobie M Helena as it appeared in LiG Tydskrif on 08/10/2021

‘Ons sal hulle weer liefhê én verloor,’ vertel egpaar wat weggooibabas versorg – LiG Tydskrif

The day after Ncami, the orphan with heart failure for whom they cared for six months, died in their arms, the Bell couple knew they would do it again.

We will love babies again, and lose them again,” a sad Tarryn Bell, social worker and co-founder of Butterfly Palliative Home told her husband Christoff, a medical doctor.

It was in September 2012 on Mabibi Beach, just north of Sodwana Bay in KwaZulu-Natal.

Back then, she says, she still did not fully realize what God was doing in their lives. She did know that He was at work.

The Bell Family  |  Butterfly Palliative Home
The Bell family: Tarryn with daughters Illy (front) and baby Sienna and Christoff with their son Joshua. The Bells adopted Joshua, who has Down Syndrome and autism, in 2015.

Ingwavuma:

Almost six years after Ncami’s death, in January 2018, the Bells received a call from friends. The friends ran the baby house The Almond Tree in Benoni. They wanted to hear if the Bells were willing to take in a discarded baby, Si, who may have Down Syndrome. As the Bells adopted their son Joshua, who also has Down Syndrome and autism, in 2015 the friends hoped that they would consider taking another child into their care.

When the Bells received the call, they had only lived in Ingwavuma for a short time. Small, remote, poor. The predominantly Zulu-speaking community between the KwaZulu-Natal hills borders Eswatini (formerly Swaziland) and is not far from the Mozambican border.

Unemployment, severe poverty and other social issues – including teenage pregnancies, and children running an entire household – are the order of the day.

Christoff had just been appointed as a senior physician at the local hospital. Tarryn continued to run their non-profit organization, Izandla ZeAfrika.

The first Butterfly: Si  |  Butterfly Palliative Home
The first Butterfly: Baby Si was abandoned in the bushes outside a soccer stadium in Soweto. Si has Edward’s Syndrome, a chromosomal condition associated with abnormalities in many parts of the body.

Si’s Story:

The boy Si, who was about six months old at the time, was found by a runner in the bushes outside a soccer stadium in Soweto. Tarryn says that if he had not been found then, he would not have survived. The dehydrated, semi-frozen and emaciated Si was taken to a nearby hospital.

He was later diagnosed with Edward’s Syndrome, or Trisomy 18. Edward’s Syndrome is a chromosomal condition associated with abnormalities in many parts of the body.

Tarryn says this condition is not compatible with life. Only 10% of babies with Edward’s Syndrome survive their first year of life. And only 1% of them, mostly girls, live after their tenth birthday.

After Si’s arrival, the Bells started the Butterfly Palliative Home as a project under their umbrella organization, Izandla ZeAfrika NPC. And so, Si became the first resident in 2018.

However, Si’s story is one of hope – he is now four years old. Because of him, the wider Izandla family heard God’s voice and offered a safe haven full of love and care for these little ones. Eventually, it was decided that Izandla ZeAfrika would close down. Thereafter, all the attention and money available was devoted to providing palliative care to young children.

Today, Butterfly Palliative Home is a registered independent, non-profit organization. They currently have room for six foster children, or “butterflies” as they are also known, in the Butterfly house.

Ma Doris holding Smangi  |  Butterfly Palliative Home
Ma Doris, Chief Caretaker and Co-Director of Butterfly Palliative Home, with butterfly Smangi. They are currently building a larger building because they only have the facility to house six children at a time. The need is great and the waiting list is long.

“Look after widows, orphans and foreigners”

Tarryn says that when they moved to Ingwavuma, God told them to focus on widows and orphans.

She says: “When we bought a house in Ingwavuma, we did not know what it would look like. Within three months we got the call about Si. The second baby arrived a week later.

“When I started looking for local women who had experience in home-care, we soon found out that many of the women in this rural community are widows. They have no income opportunities, most of them have no matric, and they all take care of a lot of children.

“We then started training widows to help us look after orphans who are terminally ill.”

Christoff and Tarryn Bell live out their calling with devotion. This calling is composed of many passages from the Bible. It reads as follows: “Look after widows, orphans and foreigners in their distress. Caring for the least of the least.

Ma Doris holding Baby Lulu  |  Butterfly Palliative Home
Ma Doris holding the newest addition to Butterfly Palliative Home, Baby Lulu. Lulu arrived at Butterfly Home in early August 2021. She has a serious heart condition called Tetrology of Fallot which was not corrected and she now needs palliative care.