After the diagnosis

“When I’m in heaven, I won’t have XP, will I?”

Judy Adamson

This year has turned Nick and Yvette Walker’s lives upside down.

In March, their eight-year-old daughter Amielle was diagnosed with Xeroderma Pigmentosum (XP) – an incredibly rare condition that meant her DNA was missing a piece that repairs skin cells damaged by UV. This means no exposure to sunlight. Ever. Amielle’s three-year-old sister Taya has the same symptoms, and a DNA test confirmed last month that she has XP as well.

You might think, “Well, that’s hard but it’s manageable. They just need to stay out of the sun.” But you’d be wrong..

“One of the big things that has happened is people saying, ‘Can’t you just keep them out of the sun? Can’t you just...?’ – and no, you can’t,” says Nick Walker. “You can’t expose their skin to any sunlight, full stop. One of the biggest struggles is that you can tell people the facts, but unless you live it you just don’t understand fully what it means.”

A very rare condition means sisters Amielle (left) and Taya Walker must be covered top to toe when they go outside.

How Christians respond in such situations can make a huge difference to those among us who have received a difficult diagnosis. Whether it’s sending a supportive text, providing food, funds, prayer or just a listening ear, we need to have our pastoral antennae switched on to understand what’s needed. And we should prepare to walk the journey along with them.

For example, at the moment Walker is contending with grief about what his family’s life was like before the diagnosis, and what it looks like now.

“It’s what you’d thought and planned compared to what is happening... like the complication of doing everyday things that normal families do, like going to the beach or going on a picnic,” he says. “We can’t just go on a holiday, or get on a plane... anything, really, without lots of planning, and thinking through how to keep the girls safe.”

GOD’S GOT THIS

At the same time, the family is aware that God is walking with them as they deal with the unknowns and difficulties of each day. His sovereign hand, “amazing timing” and guidance are an ongoing comfort.

“When Ami first got the diagnosis she said, ‘So, when I’m in heaven I won’t have XP, will I?’” Nick Walker recalls. “And I said, ‘No, darling, you won’t’. She got so excited about the fact that, when she was in heaven, she wouldn’t have this horrible condition and she’s looking forward to that – but it’s made me long for heaven even more, too: being there together where you don’t get XP and don’t get sunburnt and get cells destroyed by UV.”

For tips about how to support people effectively after a diagnosis – along with the full story of the Walkers, Kirrilee Bracht from Robertson Anglican and Jeannine Baird from Menai – see the October 2021 issue of Southern Cross.