My Story: Nellie Swanepoel

By admin
21 October 2013

Nellie Swanepoel’s granddaughter, Ellané, tragically died of Krabbe disease at only 18 months old. Here the grandmother of Pretoria talks about the disease and shares Ellané’s story.

My granddaughter, Ellané du Toit, was born on 23 December 2009 in Pretoria. Just 18 months later we had to give this angelic child back to God.

Ellané developed normally and reached all the milestones of a healthy baby – until the age of three months. Then we realised there was no further development. She cried a lot and was extremely weak for a four-month-old. Doctors weren’t worried and wrote it off as late development. She suffered dramatic episodes of irritation and crying, was afraid in any strange place and hysterical near strangers. Her hands were always clenched, which we later realised was a result of pain.

In July 2010 we insisted on tests. The brain scan indicated the possibility of Krabbe disease, a type of leukodystrophy (disorder) that destroys the white matter in the brain. Only one in every 100 000 people suffers from the condition. It’s a terminal disease for which there is no cure. A neurosurgeon confirmed Ellané had Krabbe disease and it was estimated she’d live for only three to six months.

At this stage Ellané could no longer swallow and often vomited her food and medicine. She lost the ability to control her muscles and suffered from spasms caused by light, noise and being touched. Her ability to move speak, eat and breathe deteriorated. On the advice of doctors, a feeding tube was led into her stomach to facilitate feeding and to relieve her pain.

Madeleine, Estivan and Ellané

My daughter, Madeleine, and her husband, Estivan, lived with me at that stage and I could support them with God’s grace. Krabbe children often choose someone specific to care for them, someone they feel safe with. Ellané chose me to be her daily carer.

By the age of six months the disease had caused severe deterioration. She’d lost all her muscle tone, became partially blind, suffered spasms in her arms and legs and had only partial colon function. With loving care and many prayers she did quite well under the circumstances. During her lifetime Ellané touched many lives and her cheerfulness gave hope to people.

As far as possible we raised Ellané with compassion. We laughed, played, enjoyed the sun, touched flowers and went shopping. This had a positive effect on her. Ellané had extraordinary joy despite her hardship and until her death her incredible face touched people’s hearts.

Her death was sudden and unexpected. Her vital body functions just packed up and she stopped breathing. She was quietly taken away from all her pain and suffering to her home in heaven.

We loved her unconditionally; she was our little angel from above, who’s now looking down on us and enabling us to help others through our experience by getting involved in outreach projects for others in the same position.

Through the Ellané du Toit Foundation, which we established in her memory, we want to make South Africans aware of Krabbe disease. Presently we know of only four cases and would like to support other families who are faced with this disease. The Ellané du Toit Foundation would also like to support research into Krabbe disease. Go to ellanefoundation.org for more information.

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