The Morris-Eyton family, Napier

Originally from Zimbabwe, Shaun and Carol-Anne Morris-Eyton and their two daughters moved to Auckland in 1994 and later had a third daughter. They now live in Napier. Their second eldest Candice, 17, suffers from metachromatic leukodystrophy (MLD), a rare genetic disease which affects the central nervous system.

Mum and Dad were completely unaware they were both carriers of the very same defective gene prior to having children. Candice’s younger sister Kelly, 13, is a carrier of the defective gene and her older sister Mikaela, 20, is free of MLD.

Candice was diagnosed in 2001 and since this time the Morris-Eyton family have all been guests at Ronald McDonald House Auckland at various times during the past 8 years.

At age 9, Mum and Dad felt something wasn’t right with Candice. She had always been a little clumsy and slow at school but they had never thought much of it, and blood tests were carried out but nothing unusual ever showed up. A visit to their local GP reinforced their concerns and Candice was referred to a paediatrician for a thorough assessment. Initial thoughts were that Candice had dyspraxia as all the symptoms she was showing pointed to this. A visit soon after to a visiting neurologist gave way to the idea Candice may have a mild form of cerebral palsy. Unfortunately she started to deteriorate and upon arriving for another appointment her paediatrician could tell from the way she was walking that it was not CP but something progressive that needed investigation.

Candice had an MRI which was followed up with blood tests. By July 2001 doctors confirmed Candice had MLD, this was just before her 10th birthday. Paediatricians told Candice and her family there was no cure for the disease however there was a possibility of a bone marrow transplant to help slow down the effects of the disease. At this point she was referred to a metabolic specialist at Starship in Auckland.

The family’s first visit to Auckland saw all three girls being assessed at Starship — Candice to ensure she was a healthy candidate for the bone marrow transplant and her two sisters to see if either was a possible donor match. It was decided that Mikaela was to be Candice’s donor as she did not have the disease and was not a carrier.

Initially unaware of Ronald McDonald House Auckland, the family stayed with relatives across Auckland, making the long journey to Starship every day. On top of this, they had just entered a very scary and new world from the one they had left back home. “I just wanted to run away” says Carol-Anne “from thinking Candice had no cure to then finding out there was some hope through a transplant, yet there were all these risks involved — it was all too much.”

While at Starship they were shown Ronald McDonald House Auckland. Immediately the family felt some relief, despite there being a long road ahead for Candice, their minds were put at ease knowing there was a place they could all stay together as a family — and still be close to Candice.

After returning home in August, Candice was notified her transplant date was set for 21st September. The family then returned to Auckland for what was to be a 14 week stay — Mum and Candice stayed in Starship while Dad and her sisters remained at Ronald McDonald House Auckland.

“Our first experience of Ronald McDonald House was having this whole other world open up to us. There was this safe haven where everyone was welcome. Meeting families and sharing stories — you never felt alone despite being surrounded by complete strangers! It was so great having Shaun at the House too, he could help me and Candice’s sisters were able to be a part of it all as well.”

Despite all the risks, Candice’s transplant was a great success, Mikaela also made a quick recovery, and the family were able to return home in time for Christmas.

After the transplant Mum and Candice continued with fortnightly visits to Starship. Since then her visits have now stretched out to yearly check-ups and unless Candice is in need of a specific procedure they now have the benefit of her specialist traveling to the Hawkes Bay to do her check-ups once a year.

Over the years, Candice’s body has deteriorated but thankfully not at the same rate it would have done if she had not received the bone marrow transplant. Candice is now confined to a wheelchair all of the time and in 2002 she had a feeding tube inserted — much to her and her parents’ distress. However they now see this as a blessing as Candice can eat the foods she enjoys, but at times when her intake is not sufficient she can be tube fed.

The disease has also slowed down her speech — but to her friends and family she has no trouble holding a conversation. Candice attends the local college and has the added support of a learning centre on the school grounds, just to help her with some of her subjects.

Outside school Candice is just your average teenager. “She’s generally a very happy girl,” says Mum. “There are certainly some issues around coming to terms with her disease and she finds this very frustrating at times as anyone would. A lot of the time she’s on top of the world yet there are certainly days when she gets angry and sad.”

As far as managing her disease in the future: “There isn’t a lot of information out there. We have joined up with a MLD support group via the internet so we can speak to others going through similar things as this disease affects infants, children and adults in different ways, yet the long term outlook of the disease after transplant is still unknown.”

The Morris-Eyton family’s most recent visit to Ronald McDonald House Auckland was in February 2009 where Candice had a procedure to help her reflux. “Coming to Auckland is no longer a big panic like it used to be. Candice always gets really excited about coming to the House and we still see old faces from years ago as well as meeting new ones. One of the nicest things is during the week when volunteers come in and cook such lovely meals for the families at the House — I don’t think I’ve ever sat in the House and not got choked up watching them cooking for us.”

The family feel that as unfortunate as it is to go through something like this, it is a blessing to be in the right place to be able to cope with it all. Dad Shaun thinks about what things would've been like back home in Zimbabwe. “We would never have had this sort of support. We most certainly would’ve had to travel overseas for treatment, let alone not having access to Ronald McDonald House and all the community support we’ve received — we would’ve been bankrupt by now!”

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