JJ received it yesterday afternnon, he was over the moon with it. He had a look & could not believe that people from the USA etc made part of it. he ran upstairs and made his bed with it. It came at the right time too as has been very poorly lately and is on IV antibiotics at home.
We would like to say thank you for all your help and to all the lovely people who took time out to make him his quilt. It will be treasured by him, his little face lit up when he saw it.
A huge thanks again
My son was born on the 9th February 1998, he was quite poorly from birth, failure to thrive, crying quite alot & very loose stools. At 6 weeks he was rushed into hospital as his oxygen levels were very low. We found out that he had Cystic Fibrosis, with adult flu, rotavirus & a chest infection all at the same time when admitted. He was kept in hospital for 8 weeks.
I can still remember the diagnosis day as if it was yesterday. I had never heard of CF before & nobody in my family had had it. So as you can imagine it came as a complete shock.
To go through the pregnancy expecting to have a healthy child & have it all taken away is unbearable. I still find it hard to accept & so does my son.
Things started to get better with all the treatment, although he did have to have a special mould made for his face as when he went outdoors he struggled to breathe & was also very wheezy, he was also fed through a tube at night times as he was a very small baby.
He grew up very quickly & you wonder where the time has gone. He has alot to deal with, he has loads of hospital admissions, has also had a collapsed lung which required a 3 week stay. He had a port-a-cath fitted last year as he has no veins left with all the IV antibiotics he requires every 2-3 months.
Along with CF he has aspergillis which makes his condition worse & the doctors monitor him for signs of this causing more problems.
He finds day to day things very difficult as he gets so out of breathe & wheezy. My son is on about 100 pills a day, has 45 minutes of physio 2-3 times a day, an antibiotic nebuliser, 3 different kinds of oral antibiotics at an adult dose, vitamins, stomach pills steroids & these are to name a few.
John is a very lovely boy & wonders what he has done wrong to have been given this illness. To me he is a very unique & special boy & I love him so much. I just hope that one day a cure can be found to try & help these poor children.
Written by Claire (John's mum)