Well that's easy.......Our son has had a long hard battle for all of his short life and has nearly lost it several times. We wanted to help in any small way we could and put something back, to help save a child's life and prevent another family's family heartbreak.
Also, to raise awareness for this horrific, rare fatal blood disorder Fanconi Anemia, of which our own little boy Nathan, is a sufferer. All of this is made possible by you, our donators, once again we would like to thank you.
Early arrival…My mummy and Daddy, although nervous, were very excited at becoming new parents until the doctors gave them a scare and said they wanted to take me out early as they were not happy with my growth and couldn't find out why, so I was brought into this scary world four weeks early.
After I screamed and I had been checked for ten fingers and ten toes I was given to my mummy and daddy for a cuddle. Everyone was crying, with happiness I was told. My dad was so excited, he ran out of theatre in his greens, to tell my grandparents, that he locked himself out.
My special box…I then went to meet my grandparents for the first time but after a few minutes I couldn't breathe properly, next thing I knew I had been whisked off to another room and tubes and wires were put all over me. I was put in a special clear box with a funny light and all these strange people were poking and prodding, it was very frightening and all I wanted was my mummy.
My mummy wasn't able to see me for a day so she was sent a photo of me, but when she was allowed, she wasn't allowed to hold me at first, but soon I was well enough to have a proper cuddle. A few days later I started to struggle to breathe again and I had lots of different tests until we finally got a result, congenital lobar emphysema.
No I didn't understand either all I know is I was taken in my special box by ambulance to another hospital and had an operation straightaway to remove two thirds of my left lung. I was only four weeks old and it left me very poorly so after a week I returned to Bolton Neonatal Unit.
Back home – then back to the hospital…I liked the nurses and doctors there; they were very friendly and helped me a lot. Anyway at nearly ten weeks old I finally got to go home but not without my problems. I had a hole in my heart and an open valve and I also needed a circumcision (ouch). I wouldn't eat for my mummy, but I just wasn't hungry.
I felt tired all the time and didn't have the energy to play and run around like other children. My mummy had to carry me everywhere because it really hurt my legs to walk. After eighteen months of my mummy really struggling and having no sleep, because I never slept either, the doctors decided enough was enough.
They took me back to hospital and put a feeding tube into my stomach and did the other (circumcision), but I didn't recover well and I remember a couple of days later my mum not being happy with the nurse and next thing I was back in theatre.
Apparently I had haemorrhaged from an ulcer in my stomach caught by the tube going in and nearly bled to death. Thank God for mums! Then the incision site got infected and that took ages to heal before I could finally go home. Then a few weeks later just after Christmas I went back to the hospital with my mum and that’s when they told her the worst news ever.
Lots of things…They said I had a fatal blood disorder and my life expectancy was 7-12 years without treatment and if she was planning anymore children, don't. Why give a child a death sentence! And if you do fall pregnant we want to know straight away and if it’s got the same we'll terminate. I won't repeat most of what was said as you can imagine, but to outlive your only child and be told anymore would be killed, that’s not nice.
Lo and behold a lot has happened since then, I had my heart operated on and I tried numerous treatments, but the tablets stopped working, blood transfusions weren't working, etc. My mummy and daddy became very desperate as I was told I had a year to live, maybe two if I was lucky.
My angels…I was only five so I prayed to God for an angel, a baby sister to help me. He must have been listening because I soon had my angel with her blonde hair and blue eyes. And three months later after all the tests had been done and she was found to be a perfect match for me, I had a stem cell transplant, which had been taken from her umbilical cord and frozen. How amazing is that! More that a gift from God.
That has got to be the hardest thing I have ever been through, but it was worth it. I am doing quite well now two years on although I am not cured it has given me an extra ten years and hopefully in that time a cure can be found.
More to do - but we’ll get there…I still have to have tests done as I'm prone to cancer and tumors of all areas and other peculiar things, but fingers crossed with all the research that’s going on we'll get there.
Not only that, whilst I was having my transplant in hospital I asked God for a brother, and guess what? Yep he sent me one of those as well. So not only did I get my angel, my mum and dad got three miracles.
If you would like to know more about my disorder, please go to www.fanconi.org.
Thanks for reading.
Nathan (10)
At the time of Nathan's diagnosis 1 case in 6.5million people were reported every nine years. This horrible disorder has claimed the lives of many innocent children since. We were very, very fortunate and would like to try to prevent any more, without the knowledge, hard work, skill and love of all who helped care for Nathan, he may not be here today. This is why we want to help others with your help.