Charlene Barr, the angel who lit up all of our lives
Though only 20 when she died, Charlene Barr left behind an amazing legacy. As well as raising £120,000 to build a school in Uganda, she taught her family so much about love and courage. Now, her brother David has written a book detailing her short but inspiring life. Here, in some of the most poignant interviews you'll ever read, he and his father recall...
While she waited in vain for a double lung transplant, Charlene Barr touched the lives of many through her courageous fundraising to build a school in Uganda. The petite, brown-eyed girl from Dollingstown, near Lurgan, suffered from cystic fibrosis and needed the surgery to survive.
But the very day in 2010 when Charlene was informed she needed the life-saving operation, she told her family: "I know what I am going to do. If I can't go to school, I am going to raise money to build a school in Uganda so that some of the children there can get an education."
People from all walks of life, young and old, got behind the spirited doctor's daughter. As a result, she raised the £70,000 needed in just five months to build the Hidden Treasure Christian school in Maya, the impoverished village she had visited with her family at Christmas 2008, where she had witnessed children walking miles for water, and to get a limited education. Charlene went on to increase her target to £120,000 to build a well and to provide teachers for the school.
But there is much more to Charlene's story than the selfless fundraising during her terminal illness.
Having spent her first year in hospital, Charlene went on to battle ill-health all her life, and struggled with identity issues associated with her fostering as a baby and adoption at five.
Adored and cherished by her adoptive parents, GP Richard Barr, his wife Janice, her elder brother David (28) and elder sister Rebecca (26), and younger sisters Natalie (22) and twins Bethany and Serena (20), Charlene died peacefully at home on October 30, 2010.
Only 20, she never saw Hidden Treasure built - she died just before work began on the school - but her charity, Charlene's Project, continues her work with three more schools and other projects ongoing in Uganda. Meanwhile, more development work is due to begin this summer in Guatemala.
Charlene was posthumously honoured by our sister newspaper Sunday Life's overall Spirit of Northern Ireland award in 2011, the same year her younger sisters, Natalie, Bethany and Serena, kept their promise to her of leading Lurgan College to victory in the Hockey Schools' Cup.
Last year, her sister Rebecca featured in Assembly member Jo-Anne Dobson's organ donation event at Stormont, making a moving speech in favour of the soft-option donation policy.
This weekend sees the publication of Chosen, the story of Charlene's life, by her brother David.
A Bangor schoolteacher, David writes candidly about the difficulties Charlene faced in her short life, and the impact her health and emotional battles had on her and all the family.
Ahead of the book launch tomorrow at Lurgan Show, the annual agricultural and family day in Lurgan Park, David and his father Dickie reflect on the very special girl who lit up their lives and gave a generation of Ugandan children the precious gift of an education.
'As her coffin was carried into the church, a single dove flew in and landed'
Charlene asked me to write her story one time when I was visiting her in the City Hospital in Belfast. She was in and out of hospital a lot, but she never complained. She'd be really sick and I'd come in with a pizza and ask her how she was, and she'd say 'I'm fine - how are you?' She just shrugged it off.
But she had wrestled with her identity, having been adopted, and wanted to give hope to others working through their own issues.
She had worked through hers, but it was really hard for her to have self-acceptance for a long time, even though we loved her unconditionally.
It was really through the trip to Uganda in 2008, when she saw a lot of kids who were orphans - kids who had lost their parents - that she began to come to terms with her identity. That really resonated with her and transformed her outlook. She began to talk more about it and got more self-acceptance. The year after she died, I was unwell myself for a few weeks, though not seriously. I was stuck in the house and began to realise how much I missed her, so I began to write everything down. I had a chapter done in a week, and it went from there.
I wrote about how we had longed for the day when the transplant call would save Charlene from the living hell she endured when she had to suck desperately at the oxygen pumped into her mouth.
On brighter days, I remember her in her room, crouching over her latest jigsaw, meticulously sorting the pieces. At the end, her room became a refuge, where we gathered to draw comfort from one another in our grief, as she lay motionless, as if asleep.
We prayed there; we laughed and we cried, just as we always had as a family. We clung to and took comfort from one another. On the day of the funeral in Waringstown, the police arrived to escort the hearse, as the crowd of mourners had swelled and surpassed all predictions, despite the rain.
We took her little teddy bears out of the coffin, knowing she would want to see them given to children in Uganda.
We said our final prayers as a family around Charlene, before the lid closed on her frail frame, and when arrived at the church, there were people and cars everywhere, more than I ever thought possible. The foyer of the church and every step on the stairs was crammed.
I carried my sister's coffin with my father, a close family friend and Charlene's primary school headmaster. All our cherished hopes and dreams for Charlene had been cruelly dashed, but as the service began, we remembered she was not gone. She had simply gone to her true home from which she was created; here, on Earth, she had been waiting for her real life to begin.
It was a blur. All that dread, pain and loss condensed into a short service. Mum and dad greeted and shook hands with so many; people were so kind to all of us.
The graveside sticks in my memory - the rain ran down our necks like a brook. It felt like this was happening to someone else.
We heard later that as the coffin had been carried into the church, a single dove flew in, and hovered and landed underneath its awnings.
It remained throughout the service, leaving only as the coffin passed beneath it on its way from the church. A dove is a symbol of peace, of hope and of the Spirit of God. That was so characteristic of Charlene's life. The very next day after Charlene's funeral, work began on the foundations of her school in Uganda, and when we went to the opening the following year, we were overwhelmed by the welcome from the crowds that had gathered to greet us. When we saw all those eager outstretched arms and bouncing, excited children, I knew that Charlene herself was there, not buried in a patch of earth thousands of miles away in Ireland.
In a wonderful, strange and mysterious way, we were here with our sister. We didn't leave her behind when we made the painful trip to Uganda.
Charlene's life was a struggle - a harrowing trial in multiple ways - but it had been happy and filled with beauty on many occasions. Charlene's life was like all of our individual stories, loaded with all the emotions, experiences, joys and sorrows of life.
I told her she should write about her life herself, after her transplant, but she wanted me to do it. She was an incredible person."
'She said 'If I don't make it will I go to heaven?' I know we'll see her again'
She was just past her first birthday when Charlene came to us. We didn't set out to adopt her, we initially took her for short-term fostering from the neo-natal unit in the Royal Victoria Hospital in Belfast in 1991. My wife Janice was involved in social work and it was difficult to get Charlene placed, due to her health problems, and her birth mum wasn't able to manage.
But with me being a GP, we were suitable and it soon became a long-term placement. When we went to the hospital to meet her for the first time, it was evident she had a lot of physical needs, but she was such a lovable, adorable child, we took to her straight away and she settled in with us incredibly quickly. She had beautiful brown eyes ... beautiful.
I remember the night we took her home from the Royal, she started to cry in the car. It dawned on me that it could have been the darkness, so we turned on the light and she stopped crying. She had been so used to artificial light 24 hours a day in the unit. By six months, we knew we wanted to adopt her, but it was a long process, only completed when she was five.
Her prognosis wasn't great. She'd had so many serious infections and surgeries in her first year of life. She did amazingly well considering, and adapted incredibly well outside the hospital. She would get breathless and cough, but she was an adventurer and would try anything when the children were playing games and having races and ball-games and so on. She was an incredibly plucky child. She did her utmost to keep up and she'd get frustrated when she couldn't.
And even when she was very ill, she'd always say 'I'm okay' if she was asked by people outside the family. If someone came to the door, off the oxygen mask went!
She was an incredible fighter. She struggled with so much inner turmoil as well as her illness, but she was never negative. The only time that changed, briefly, was the day she was told she'd need a double lung transplant.
After we got the news, we all went to Nando's - we tend to gather round food as a family in times like that - and the mood was one of despair. Charlene said 'What am I going to do?'
Then, it was like a lightbulb came on and she said she was going to raise money to build a school in Uganda. She had been there with me for an HIV charity in 2008, and there was no stopping her once she set her mind on this idea. She always talked about going back after her transplant.
She'd been assessed at the Freeman Hospital in Newcastle-upon-Tyne about 18 months before she died, and put on a waiting list. She'd had ups and downs since that. Trying to keep her weight up was a struggle and she had lung abscesses on and off. But right up to the day she died, she hoped for a transplant and that hope kept all of us going. I'm sorry, I get a bit emotional looking back.
We knew she had had a very tough first year of her life and we wanted to be there for her at the end. She was on her wee oxygen machine and she just slipped away, very quickly. She wasn't able to eat much towards the end, but she always wanted to be with us when we were eating, so she'd lie on a sofa beside the dining table.
She passed away on the sofa. It was one of the rare occasions we were all there, and we all told her we loved her. I think she knew she was dying then. But she has real faith and she was really peaceful at the end.
She always used to talk about what she was going to do once she got her transplant, but about two weeks before she died, she asked to talk to Janice and me after dinner. She said, 'If I don't make it, will I go to heaven?' I laughed and told her to trust Jesus. Then she said, 'What have I done with my life?' She couldn't see it, she felt she'd accomplished nothing - but look at the legacy she left. She used to banter me about going one better than my six children and having seven, and now she was facing the possibility of never having any. I told her to think about all the kids she had helped in Uganda.
I feel that is where she is. When we went to the opening of the school in 2011, this little 12 or 13-year-old girl came up to us with a baby brother or sister on her back, and asked Janice, 'Are you Charlene's mum?'
Janice said yes and the child said 'I miss my little sister'. That's the way she thought of Charlene, because she was small. We brought her teddies, and the shoes and clothes she wanted us to give to the kids.
We're keeping Charlene's project going for her and I'm very much in favour of the soft option for transplants. I know it's hard for a family with a loved one on a ventilator, if they don't know what the person would've wanted, for them to make the right decision. But there would definitely be far more organs available if that was the case.
Charlene had so many things she wanted to do - we're still finding lists of them. I know we'll see her again, but we miss her."
How Charlene is helping Uganda
Charlene's Project was set up in 2009 after founder Charlene Barr was inspired by a visit to Maya in Uganda. She set a fundraising target of £70,000. After this was raised in just five months, Charlene increased her target to £120,000 to build a well and to provide teachers. Despite Charlene's death in October 2010, building on the Hidden Treasures Primary School continues today. To order Charlene's story Chosen, and for information on how to donate, visit www.charlenesproject.org