We Cannot Walk this Journey Alone

The EncouragerOne of the maybe less-known ministries of Elevate is our Emmanuel Support Group, currently run by Penny and Nigel Shivas. This Auckland couple in some circles may be better known as “the parents of Olivia and Benjamin”. Emmanuel Support seeks to give spiritual, emotional and practical support to parents and families of a child, from infant to adulthood, with any disability. Nigel and Penny have an understanding of the stress and pressure that occurs when you have a child with a disability. When they found out both their children had a physical disability there was a lot of unknown, as is the case for most parents. Penny says, “I was having a lot of questions about the unknown and what the future looked like for us. I couldn’t find anyone to talk to.”

They initially got involved in Emmanuel Support through a connection at church. “A lady from the church we were attending at the time, who was involved with Christian Ministries for the Disabled, told us about a meeting. We went and met Di Willis [one of the founders of Elevate]. She told us about Emmanuel Support.” Penny says “We then attended a parent’s retreat and really bonded with other parents there. There was a degree of nervousness at the start. However, we shared stories and started to appreciate each other. And we have been great friends ever since.” Often the bulk of child care and appointments may be the responsibility of one parent more than the other due to practicality of work commitments. This can mean that each couple’s experience of parenting is different, especially for parents of a child with a disability. Nigel says that, “As fathers of children with disabilities, we don’t always see the full extent of what our wives go through. Due to work, we are not always there for key moments of our child’s development such as their first day at kindy or first day at school. We are not always able to attend all the meetings with doctors, physio’s or occupational therapists. Many of these things can turn out to be watershed moments that wives carry unexpectedly alone at that moment. I was not there for my daughter’s first day at school. And as it turned out, it had a major impact on my wife. She saw all the other ‘normal’ children running around and our daughter not able to keep up or join in. These experiences build up and can then take a toll on relationships unexpectantly.’’

Nigel admits, “When we first got involved in Emmanuel Support, it was with some nervousness on my part. I had a wife that desperately needed more support and friendships from others in similar situations. But as men, we often feel if we can’t fix it ourselves, we are lacking. However, as a husband and parent to children with disabilities, I have learnt we cannot walk this journey alone. And to some extent I found as a husband, I needed to let go of trying to meet all these emotional needs by myself and put it out there that we needed help. Nothing prepares us for a child with a disability and for any relationship under strain we need others in our lives. It’s often others who have walked the same journey that are in the best place to ‘be there’ at the right time. Emmanuel Support was a really big part of that support we both needed at the time and still do.”

There are so many needs for parents of children with disabilities. But Nigel shares that both of them have found that “sometimes, what you really need, is just a listening ear from others who are in your same space. Someone who has lived the same experience being a special needs parent. Someone to pray with and lift our challenges before God. And Emmanuel Support provides that. We don’t have the resources to provide financial or physical help as such. However, we are a group that cares and listens. Just as a by-product of that friendship, people often find out about other agencies that can help. One of our Mums, Dorothy is great for that!”

Emmanuel Support was set up largely to provide opportunities for parents to get together and share freely without fear of judgment. As well as help families come to terms with grief, deal with feelings of isolation and loneliness, and find wholeness in Jesus Christ. “We do that through activities such as retreats and catchups,” says Penny.

“Although it’s been challenging with Covid, we try to run 3 retreats a year. One for parents, one for the women and another one for the men. We hold a children’s Christmas party and Parents’ Christmas dinner. During the lockdowns we have been having weekly Zoom calls.”

Those retreat weekends have been very successful. “At times, parents really need a break from the children they care for, to recharge their strength. At retreats, they can get away without having to do the day-to-day routine. This also allows connecting with a group of parents going through the same scenarios. Parents are able also to share without being judged. Emmanuel Support creates opportunities for networking with other parents that might have been through the same experiences.”

The next retreat is booked for the Easter Weekend, at the usual venue Peacemakers in Parakai (50km north of Auckland). If you are interested in finding out more about Emmanuel Support, please contact Nigel and Penny. All activities are communicated through newsletters, sign up by scanning the QR code below. “With the support of other parents, we become a bigger family, understanding and supporting each other’s journey.”




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Our Family Story – Three Generations of Duchenne Muscular Dystrophy

“We will tell the next generation the praiseworthy deeds of the Lord, His power and the wonders He has done.” Psalm 78:4

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

“This sickness is not unto death but for the glory of God.” John 11:4

Left to Right Standing – Sean and Cherie O’Sullivan, Heather, Brian, Jordan Linton, Karen Linton
Left to Right Seated – Ben and Joel O’Sullivan, Judah Linton

My journey with disability began in 1949 when I was three years old. Our family lived on a farm in the Waikato, where my dad was a dairy farmer. I was barely old enough to know what the word meant, but disability was to be part of my life from the day my brother was born. Peter’s birth was a difficult one for my mother, and she knew something wasn’t quite right with her third baby. He didn’t suck properly so took ages to feed and had poor muscle tone. He made slow progress physically and didn’t learn to walk until he was two years old. When he started school at five a local kindergarten teacher observed that he seemed much slower in his learning than the other children. As he grew older we noticed he gradually grew weaker. Peter was a happy child, so we called him Smiley Pete. My parents loved God and lived out their faith in their daily lives. While not knowing what his problem was, Mum and Dad believed God could heal him. When he was seven an aunty friend took him to Australia to be prayed for by the healing evangelist Oral Roberts. While he did have some improvements, sadly he wasn’t healed; rather he grew weaker as the years went by. He eventually ended up in a manual wheelchair and lived at home with my parents. After 2 years at school he took correspondence lessons at home, which I loved to help him with. The diagnosis of Duchenne Muscular Dystrophy (DMD) wasn’t made until Peter was about nine. Sadly, he died just after his 16th birthday, in 1965, after increasing weakness and having difficulty with breathing.

While we grieved for Peter, each in our own way, our family went on with life in the years ahead. There was no indication that this disability would affect any others in our family. A few months after Peter died I became friends with Brian Vincent from the church we attended, Pukekohe Baptist. We married in 1968.

So, the years went by – we little dreamed that our lives were about to change dramatically. By the early 1970’s Brian and I had become the proud parents of three children, Cherie, Karen and David. I was finding fulfilment as a young wife and mother and God gave me many scriptures to encourage me.

However, as David grew, we noticed he couldn’t run or walk very fast or climb trees like his sisters. He was starting to remind me of Peter. After a series of tests and X-rays when David was four, he was diagnosed as having Duchenne Muscular Dystrophy. Yes, it was the same disability as my brother! This disease causes the muscles of the body to slowly waste away until even the muscles of the heart and lungs are affected. It is a genetic disorder, affecting only boys, and caused by the lack of a protein called dystrophin in the muscles. It is characterized by progressive muscle degeneration and weakness. Being genetic meant I was probably a carrier, with the potential to pass this on to my children; a 25% chance of any sons to have it, or 25% chance of my daughters to be carriers of it. This was confirmed after I had a blood test and David a muscle biopsy. My mother must have been a carrier too, as both my brother and I were affected.

At back – Heather (me), Bruce (Dad).
At front – Peter, Steve, Flo (Mum), Kath

Up until then I didn’t know I was a carrier. We now knew Cherie and Karen could be carriers of the defective gene as well, potentially passing it on to any children they might have, but then only nine and seven, it was too early to tell. They became wonderful caring sisters to their brother, even though he needed extra attention as he grew older. He was a happy boy and we often said, “Keep smiling David, makes us wonder what you’re up to!”

While this was devastating news at the beginning, God encouraged me with the scripture, “This sickness is not unto death, but for the glory of God.” John 11:4. We believed God would heal him, and we took him to healing meetings for a while. But we reached a point where we relinquished his healing into God’s hands. As the years went by, he not only inspired us, but everyone he met. “It’s all right Mum,” he’d often say. “I know God can heal me – I just don’t know how or when.” He grew to be a young man with a strong faith, who seemed to take his increasing weakness in his stride, even when needing a wheelchair and unable to do much for himself. God encouraged me with the scripture in Exodus 2:9 (KJV) “Take this child away and nurse him for me, and I will give you your wages.” And He has done just that. When David got his first electric wheelchair, he loved whizzing around Hebron School, to the envy of his classmates.

When they tried to stand on the back for a ride, it annoyed him, so he did a quick turn in the chair and flicked them off the back! David eventually attended Mt Roskill Grammar where there was a disabled unit. He did well there, and continued his education by studying architectural drafting at Unitech. This enabled him to design our new wheelchair accessible house with a harbour view in Te Atatu, which we moved into in 1994.

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

When Cherie, and then Karen, got married they faced uncertainty regarding starting a family because of the hereditary factor. Cherie and Sean wanted to know if Cherie was a carrier, so when they married in 1989 she had a DNA test done. It was determined that she was a carrier, so they knew the risks involved. Cherie said at the time, “There is a 75% chance that our child will not have DMD, so this is a risk we decided to take.”

In 1995 Sean and Cherie’s first son Joel was born. A month later blood tests verified that he had DMD. We were devastated – this was not what we were expecting to hear. This disability was not going away, it was now affecting a 3rd generation. Joel, our first grandson, won his way into our hearts as he grew. Just a year later, Ben was born and he too was given the same diagnosis. This too was devastating news: it was too big for us, but not for our God, whom we believed was still in charge. We decided we’d trust Him with our future, as we watched Joel and Ben grow up; they were a double blessing. When asked what he thought about having two nephews with DMD, David was quite matter of fact. “They could find a cure for MD before they get too old and that would make a difference.”

Karen married Ivan in 1995, and soon she was pregnant. She and Ivan decided not to have tests to determine whether Karen was a carrier or not. They didn’t want the knowledge of a disability to potentially affect the way people treated their children – for as long as possible. And they knew God would be faithful whatever the outcome. Jordan was born in 1997 but as he grew showed no signs of muscle weakness, rather the opposite – he was full of energy and bounced all over the place. Judah was born two years later, and he too wasn’t tested. However, as he grew older Karen began to notice the tell-tale signs of DMD: muscle weakness, not able to run properly, or pedal his bike very well. So at nearly seven years old, (in spite of the doctors thinking he was a bit too average to have DMD) Judah was diagnosed with the same disability as his cousins and uncle! We were all in this together. And three out of four of our grandsons have the same disability. At the time it was mind-boggling to realize this and the implications for our family. But David himself became a role model for his nephews and was so proud of them. They loved having rides on the back of his wheelchair but he wasn’t quite strong enough to sit them on his lap!

Caring for David took its toll on Brian and I even though we had wonderful caregivers to help us. We were grateful for the support of the folk from Elevate, like our wonderful friends, Hugh and Di, and the many Labour Weekend Camps we attended. Eden AOG was our church then, where Geoff and Joanne Wiklund pastored us. They could see the tremendous stress we were under so Geoff suggested we take a ‘sabbatical’ break from David’s care. So in 2000, when he was 25, David moved into a supportive flatting situation in Mt Albert. This was not an easy decision: we had to let our son go to be cared for by others. However, some of his friends from Elevate lived here, including another young man with DMD, so after six months he was happy to continue. Two years passed and it became apparent that he needed more intensive care than the flat could give him, so he returned home. His weakness increased, affecting his breathing and eating. Finally in September 2002, aged 28, David passed away into the presence of the Lord he loved and served. It was his Nana’s 88th birthday (she outlived her grandson by five years).

Left to Right – Karen, Heather, Brian, David (seated), Cherie.

Our grandsons now became our focus as we supported them, enjoying regular family times like Christmas and birthdays together. We proudly watched as their parents cared for their sons and gave them great experiences. Karen even took Jordan and Judah to Rarotonga in 2008 for a year’s teaching position, while the O’Sullivans went to Bathhurst Motor Sports in 2007. The four ‘little’ boys grew to be handsome young adults, and have enjoyed getting together as cousins! Each one has unique gifts and talents in art, music, memory and computer technology, while they all love motor sports! Cherie’s family now live in Tauranga, as we do, while Karen and Judah live in Hikurangi near Whangarei, and Jordan lives in Palmerston North.

In 2018 Ben developed a serious heart condition which needed treatment. Miraculously he and the family were still able to take a ‘bucket list’ trip to the United States, with sightseeing, motor sports and a Church Worship School on the agenda. However, Ben’s heart condition didn’t improve and a year later in March 2019, he passed away. He’s now no longer confined to his wheelchair. Joel and his parents miss him very much.

It’s only by God’s grace He has enabled our family to live this big life. From my parents to our grandchildren, we as families have found God’s faithfulness and grace truly has been sufficient for all our needs. For His grace is made perfect in weakness, including the weakness of muscular dystrophy. When we are weak, He makes us strong. I wrote “It’s Allright Mum!” as a labour of love, but also as therapy as I worked through some of the issues that disability in the family brings. I wanted to encourage families who were living with a disability. I wanted say “It’s all right, Mums, and Dads, God’s got this! He’s in control and He’s the same yesterday, today and forever. He’s the God of compassion and He can comfort you like He has comforted us.”

“The Father of compassion and the God of all comfort, comforts us with in all our troubles, so we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3-4

Heather Vincent lives in Tauranga with her husband, Brian. They have both been involved in Elevate since attending National Camp in 1985. Her book, It’s All Right Mum!, was published by Daystar in 2004.



Image of the cover of the encourager magazine issue 173 March 2022


Want to read the full magazine? Click here to read the current and previous issues or to sign up to get future issues delivered digitally to your mailbox or posted a hard copy!