One year today
Abby, you have your brighter day. We'll see you soon. xxxx
Archived updates, memories, photos and videos from our daughter Abby's amazing life
Abigail Erin (16th September 2003 - 8th March 2007)
Abby, you have your brighter day. We'll see you soon. xxxx


This week's classic photo was taken on Boxing Day, December 26th 2005. We'd popped in to our friends Martin and Rachel's house and whilst we were there snapped this pic of Abby and her friend Kitty on the sofa. The two girls were born just weeks apart but of course with very different outcomes. Parental hopes of a lifelong friendship between Abby and Kitty initially seemed to have been dashed, but actually that's exactly what happened. Kitty really took to Abigail. This photo, when both girls were around two years and three months old, is a lovely reminder of that unspoken spark between them.
This week's classic photo is a picture we took of Abby when the kids were enjoying the sunshine in the garden at our old house one summer's day. It was taken on the afternoon of 8th June 2004 so Abigail was nine months old. The photograph is significant because it was taken in the very short six week period after Abby had at last come home from hospital but before she went back in due to epileptic seizures.
This photograph was taken on the morning of 1st September 2005 during our first trip to Disneyland whilst away in France. This was our first family holiday abroad with Abigail and the kids all loved the theme park. Abby particularly enjoyed this little boat trip and really seemed to take in the lights and sounds of many of the rides. She was nearly two years old in this shot.
Many of you will know that Matt works for ITN and we were delighted that so many friends and colleagues from the television news provider were able to journey down to Chislehurst for the Service of Thanksgiving last week. Some of the studio crew from Channel 4 News were among them including its main presenter, the wonderful Jon Snow. Jon was kind enough to write about his experience of Abigail and the funeral in The Sunday Observer this week and also devoted his short Snowmail programme on More4 on Saturday to her. We're grateful for your kind words, Jon, and glad that you got to meet Abby when she visited the newsroom last year!
This is the piece that Mary Nightingale read out at the Service of Thanksgiving, which really sets the scene of what it's like to have a child with a disability. It was originally written some twenty years ago.WELCOME TO HOLLANDI am often asked to describe the experience of raising a child with a disability – to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
By Emily Perl Kingsley
When you're going to have a baby, it's like planning a fabulous holiday trip – to Italy. You buy lots of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, go away, because the loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.©1987 Emily Perl Kingsley
Here is the text of what Matt said at Abby's Service of Thanksgiving before showing the original Honest Questions About Abby video and collection of photos. The video features Daniel Bedingfield's beautiful song Honest Questions which has helped us enormously in coming to terms with Abby's condition.As most of you will know, Abby’s story started in September 2003 when she was born by emergency caesarean-section after difficulties in the womb. She spent a month in special care, where it was discovered she'd suffered "catastrophic" brain damage due to a lack of oxygen before birth. Abby was in hospital for the first nine months of her life and nearly died on several occasions.
When she finally came home to be with us as a family, we had to get to grips with a very different kind of parenting. Abby suffered from severe cerebral palsy, severe epilepsy, had very little control of her limbs and was nearly completely blind. Doctors said she may live for twenty years or "she may not make her first birthday".
In January 2005, Abby defied the doctors’ worst prognosis and reached sixteen months old. During that time, Nix and I had struggled a great deal in coming to terms with Abigail's condition. We had many questions about what had happened, what could’ve been, and how to reconcile our faith through it all. Some of those questions will remain unanswered until we too get to heaven.
Two years ago we collected a series of photographs from Abby's life and made it into a DVD. It depicts a journey from those awful early months through to happier times at home with us. We wanted to show that although Abby's overall prognosis remained very bleak, we had begun to see some "brighter days".
The video is a testament to how far we’d come as a family in that first year and a half. A testament to how far Abby had come. So this is part one of her story. These were our ‘Honest Questions’.
Here's what Nix said at the Service of Thanksgiving before introducing the second collection of photographs from Abigail's life and the You Say It Best video. It features the Ronan Keating song When You Say Nothing At All.When Abigail was born three and a half years ago, our lives were turned upside down and indelibly marked forever. We had chosen the name Abigail because of its meaning, “Father’s delight”, but the first nine months were anything but delightful.
In those early months our one aim was to get Abby home – to live with her as part of our family and to make memories. And, as you’ve seen, we did that. Abigail became an integral part of our family. We learned to adapt to her needs and though her care was not always straightforward it was never a chore, because Abby made it easy.
Abby needed much, but demanded little. She had a presence that could not be ignored; she engaged people. Since her death many people have said how privileged they were to have met Abby, yet she could not see or talk or reach out and touch people, but she communicated in a way that is unexplainable.
It was our privilege to be given the task of parenting her. She has taught us so much. We know what it’s like to love utterly, without conditions, and we’ve experienced at first hand the good in people. We’ve come to know many people who selflessly spend their lives trying to make the world better for people who can’t do it for themselves. To have experienced that has been a life-enhancing journey.
Our lives will never be the same; the Abby-shaped hole in our hearts will always remain, but we’re grateful that we shared three and a half years with our very special daughter: Abigail Erin – the “Father’s Delight” who communicated so much without saying a single word.
16th September 2003 - 8th March 2007"Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me."Love and blessings,
We're very aware that so many people have been accessing the website today for news of Abby. We're sorry that there has been no news until now. It's been a long and difficult day, but I don't propose to give every detail now.
After talking to the consultant at lunchtime today, it was clear that Abby has been deteriorating over the last few days. A further chest x-ray this morning showed that Abby's damaged lungs have got even worse and are beyond repair. Tonight, as I write this from the computer at Abigail's bedside, we are entering the final hours of her beautiful, strong-willed, love-giving and yet difficult and eventful life.
She is very comfortable but fading now. Friends and family have been visiting and Abby has had lots of lovely cuddles. She's very settled indeed and very peaceful. We are both spending the night here at the hospital and we will update here soon. We're so incredibly grateful for the love and support of so many people.

Monday showed no discernible difference in Abby's condition despite the steroids she's been given, although doctors don't necessarily expect to see results just yet. Matt had another long chat with one of the consultants who said it could take three to four days before any improvement from the steroids is seen - if it works at all. Likewise, Abby has been put onto another antibiotic to fight an additional chest infection and it will be a similar timescale before it's known whether this bug has been cleared. We're really looking at the end of the week before doctors will be able to make a reasonable assessment as to whether the steroids and antibiotics have done their job.
Overnight yesterday into this morning, nurses reported that Abigail had suffered several episodes of a very low heart rate and desaturation. This was a concern to doctors because they had no immediate explanation as to why she might do that. Abby also had quite a lot of diarrhoea overnight too, despite the fact that she has been off her normal milk feeds for two days and is just on maintenance IV fluids.
So after a slightly brighter outlook yesterday (Saturday) with the news that the latest chest x-ray was clearing and that the pneumo-thorax had dissipated, we were disappointed to learn that Abigail didn't have a great night into Sunday morning. She was unsettled, didn't sleep much and had another tachycardic (high heart rate) episode. Doctors feel that this may simply be a kind of panic attack over the low pressures on the ventilator; that she is 'fighting' it too much. Doctors felt it necessary to administer a dose of Lorazepam to calm Abby down. Unfortunately this is also a respiratory repressant so Abby's low ventilator pressures went right back up to 16. She was also running occasional temperatures and dropping her oxygen sats overnight, so all in all, we were down this morning and felt that things had taken yet another step back.
Many thanks to Dad and Kerry for helping update the blog yesterday whilst we were both up at the hospital. We were very keen that people who are kind enough to keep up to date with how Abby is doing were informed of developments yesterday. It was certainly a very difficult day indeed after the apparent improvements midweek.