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I am Dan Gill, owner of Window Widgets and Eclectic Systems (Residence 9 brand). I live in Poole, Dorset with my wife Wendy and our three children, Archie, Maddie and H (Hanna) and I have been asked to write an account of Maddie’s story, after whom the charity is named…
In October 2013, Maddie was a healthy, happy go lucky 7 year old girl. She had a nosebleed at school and a few days later, she almost fainted. We thought nothing of it and she went about her normal routines of swim club, netball and passed her level 1 sailing. On a Sunday afternoon, the family walked along the seafront in Swanage. Maddie couldn’t keep up and I went to get the car to pick her up.
When we got home, we noticed some small red spots on Maddie and she looked pale. I left for work as usual on a busy Monday, while Maddie went to the doctors with her Mum. The doctor told us to go immediately to Poole Hospital and at 2pm I left work to return to see her, as I didn’t feel all was well. By 5pm that night, I was told that they suspected that Maddie had Leukaemia. From a walk along the seafront to news like this within 24 hours!
I spent the night with Maddie in hospital and we were transferred to Southampton Hospital the next morning. We arrived in a Children’s ward full of child cancer patients, where they had bald heads and were vomiting after chemotherapy. It was terrifying. We hadn’t seen anything like it and here we were living on the ward. We spent a week there and found that Maddie didn’t have Leukaemia, but had Severe Aplastic Anaemia. Basically, this meant that her bone marrow had completely failed and wasn’t producing any cells.
This is a very rare condition categorised as affecting less than 1 in a million children. The consultant had only ever seen 2 patients before. It is a life threatening illness.
We endured 2 weeks of testing all family members to see if the condition was gene related. With a 3 month old baby and another 9 year old daughter, this was a terrifying thought. We were also checked for viruses. Fortunately we were all clear and the condition was recorded as cause unknown and we have no idea what happened to Maddie to this date.
So Maddie has had blood and platelet transfusions for the last 8 months and she had daily blood tests. Her severe neutropenia meant she couldn’t fight any infection and we had to check her temperature every 2 hours and take endless drugs. Every temperature spike resulted in a 5 day stay in Poole Hospital on strong antibiotics, with observations throughout the night. It’s a very serious problem when you don’t have an immune system. Even your own body has bacteria which will attack you.
A small splinter resulted in emergency surgery and a 10 day stay in hospital, all within 30 hours of it happening.
So daily blood checks, regular 5 day stays in hospital, blood transfusions that last 4 hours, but 6 overall. They tried a treatment designed to get her bone marrow functioning again and it gave Maddie horrible side effects and didn’t work. It was a horrible experience.
But on St Georges Day this year, Maddie had a bone marrow transplant at Bristol Children’s Hospital, some 8 months after the initial diagnosis. Anthony Nolan found a 100% matched donor (as her siblings weren’t a match). This was fantastic and I cannot tell you how happy we were. So many people die before a match is found and Anthony Nolan came through for Maddie.
As I write this on 22nd May 2014, Maddie is being discharged finally tomorrow from Bristol Children’s Hospital and can return home. She has been in isolation in a room and without visitors for 5 weeks. She hasn’t seen her brother and sister in that period. As parents we are completely exhausted with a business in Gloucester, home in Poole, Dorset and our Maddie in Bristol.
But tomorrow we get to take our wonderful daughter home. She is producing her own blood cells and she now has a near normal neutrophil count. She is completely bald following the chemotherapy and cannot go to public places e.g. shops or restaurants for some time and she will still be tested regularly. Maddie takes lots of drugs and needs to be very careful and there are challenges ahead.
Anthony Nolan helped Maddie just in time. The cumulative effect of so many transfusions meant that she was the most urgent bone marrow transplant case on file. Without their fantastic work Maddie would not have had a chance. I have to say that the treatment that Maddie has received has been fantastic. The NHS maybe sometimes frustrating, cumbersome and slow, but in my experience their expertise in this subject is world leading and pioneering. I would like it on record that we are overwhelmingly grateful to some wonderful people who work in that organisation.
Industry colleagues and good friends have helped set up this charity and I am delighted and honored that in this first year, we’ll be supporting Anthony Nolan, in recognition of what they have done for us. Everyone has a cause that is special to them and in subsequent years we will choose charities that have supported people or causes special to the glazing industry. I am delighted to be involved and proud of our industry and hope that each and everyone of us wll get behind this.
Dan Gill, May 2014.
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