Faith helps family deal with little Lucy’s Progeria diagnosis

The Parke family: David and Stephanie with their children Lucy, Jake and Jenny
The Parke family: David and Stephanie with their children Lucy, Jake and Jenny

Little Lucy Parke was born with a very rare condition called Progeria, which means she is ageing prematurely.

Her mother Stephanie tells Laura McMullan how God has been her rock through both the tough times and the precious times.

“We have had so many opportunities because of Lucy, met many people and travelled to far places,” says Co Down woman Stephanie Parke.

She adds: “I never got my permanent job, but the job am doing is far more rewarding, if not a little stressful and very busy.”

Trained teacher Stephanie, who lives in Ballyward with her husband David, four-year-old daughter Lucy, and twins Jake and Jenny, three, says that she, like many of us, had her own vision of how her life would turn out.

She imagined that she would marry her childhood sweetheart, get a permanent teaching job, and then start a family.

Well, the permanent job may not have happened, but Stephanie was blessed to become a mother to not just her twins, but her very special little girl Lucy, who was born with a rare condition called Progeria, which causes premature ageing.

Children affected by it can age up to eight times faster than normal, and there are only around 95 cases worldwide. Lucy is only the third child in Ireland to be affected by it.

When she was initially diagnosed, Lucy admits that the whole family were “devastated”. A committed Christian since childhood, she confesses that she questioned God.

“Why? Why would you allow the child we longed for to have a premature ageing condition?” she says, recalling how she cried out to God.

“We told the family and they were devastated but I put on my brave face and rarely cried in front of anyone. I can now say, why not us. Being a Christian doesn’t mean that life is easy but that we have God to help us deal with it”

A farmer’s daughter, Stephanie enjoyed attending Drumgooland Presbyterian Church in Closkelt as a child, as well as Girls’ Brigade, and youth club.

“My granda and granny were caretakers in Derryneil Baptist Church down the road, and I would have gone with my dad most Sunday nights,” she says. “We were brought up knowing about God. We went to Good News Club in Derryneil and it was after one of these meetings that I committed my life to Christ when I was young. I don’t know what age I was or have a date, but I remember going home that night and praying for my sins to be forgiven and for Jesus to accept me as His child.

“Not much changed, if I’m honest. I went to a small primary school and continued with all the organisations. I attended many CEF camps in Kilkeel and learnt more about God’s love and blessings. I went to Banbridge Academy and there I joined SU. I guess I was really blessed to have so many opportunities to learn about God and his love.”

Stephanie first met her future husband David in Newcastle on July 13, 2000. She was doing her GCSEs at the time, and eventually went on to study teaching at Stranmillis College in Belfast.

“We got married in 2006 after being together for six years, and moved into David’s home on the farm. We now belong to Drumlee Presbyerian Church.”

Stephanie got a temporary teaching post in a school in Lurgan, but not long afterwards, discovered she was pregnant. “The pregnancy was healthy and Lucy was born normally at 40 weeks plus six days, on November 10, 2009. She was 7lb 3 and a half and we were delighted. It must have been the next day that we noticed her fingers and knees wouldn’t straighten but someone suggested that was maybe just due to how she was curled up in the womb. Her skin seemed really wrinkly, like that of an old man’s, but her fingernails were perfect, like they had just been manicured.”

However, when Lucy’s skin began to peel off like sunburn, consultants said she might have a skin problem. Gradually, it came to both the Parkes’ and doctors’ attention that little Lucy’s weight wasn’t increasing and she wasn’t feeding very well.

In spite of many trips in and out of hospital as some of Lucy’s early health problems began to emerge, Stephanie wasn’t too worried: “I never really thought anything major was wrong and I don’t remember questioning God. I was so thankful to have my daughter. The appointments were just the norm.”

What followed was a period which was intensely bittersweet for both David and Stephanie. They found out that Stephanie was pregnant – with twins. And it was also confirmed – after another stay in hospital for Lucy, who had been vomiting repeatedly – that their eldest daughter had Progeria.

“We were thankful and excited at the prospect of twins (one in 80 chance) but then we had just been told our child had a fatal condition (one in eight million) which would need extra care and attention. How could I look after twins and Lucy without Lucy being a bit neglected? “We just had to praise the Lord for his goodness. God had given us an extremely special child who may not be here for a long time but also blessed us with twins.

“Over the coming months I guess being pregnant with the twins were a bit of a distraction for us from Lucy’s condition and when others found out they were great. God really does give you what you can cope with. One verse which really stuck out for me was Jeremiah 29:11: ‘For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.’

“He planned it that Lucy would have Progeria and the twins were born as he promised in Psalm 139:13: ‘For you created my inmost being, you knit me together in my mother’s womb.’

“God knew what he was doing and by the looks of it my plan for teaching was not God’s plan. There is no way I would want to miss any of Lucy’s life when it may be so limited.”

When Jake and Jenny were born, Lucy was only 16 months old and not walking or crawling. It was not easy for Stephanie, but her sister Gillian’s support was “fabulous”, and she says that God “definitely blessed me with her and with such a big family”.

She adds: “God had been preparing me all my life to deal with Lucy and her condition, and to glorify Him through her. God has been and is our rock throughout it all and is definitely carrying us through.

“There are bad days when Lucy is crying in pain and I do often question why God would allow her to suffer like this. I don’t have an answer but I know God is a loving and faithful God who has a big plan for us all if we choose to follow Him daily. God is able to transform us, I have learnt that we can’t do anything without Christ, but if we try to live our lives wherever we are to God’s glory then he will transform us. Each of us meet different people and if we live our lives the way God wants us to, depending on Him then others will see His glory and power in our lives.”