BiographyDaniel was born with cystic fibrosis which is a genetic, progressive life limiting disease. It affects the lungs, liver, pancreas and bowels, There is no cure for cf. I found out there was a chance my baby would have cf when I was 20 weeks pregnant. Bloods where then done on his dad and I which confirmed we both carried the faulty gene and that meant there was a 20 percent chance Daniel would have cf. When he was born his cord bloods were tested and this confirmed that he did in fact have cystic fibrosis. We were so sad and shocked because up until now there was never any family history of cf. From 6 weeks old Daniel had to start taking a list of meds, this included daily antibiotics to help keep bacteria from growing on his lungs and liquid sodium chloride because he would lose too much salt through sweating. His pancreas does not work properly so he can't digest fat so he has to have artificial enzymes with everything he eats, this has increased over the past 11 years and he now takes up to 30 pills a day. As well as meds he has to do twice daily chest clearance therapy to help clear sticky mucus from his lungs. When he's unwell this can increase to up to 4 times a day at 30 mins a session, and may require him to be admitted to hospital for iv antibiotics. This is normally a minimum 2 week stay. He also has to do inhaled medication twice a day to help clear mucus on his lungs. He's had 2 surgeries to remove nasal polyps from his sinuses which is one of the symptoms of cf. On top of his cf Daniel also has hyper mobility and dyspraxia. This makes daily life more of a challenge for Daniel. He can't play contact sports like football with his friends, nor can he ride a bike or scooter. He has trouble tying shoes laces and putting on his socks but is working really hard to improve on these things. He works so hard to keep well and does all his treatments with a smile on his face, he really is such a special boy. Receiving a love quilt would mean so much to him . I know he would cherish it forever.
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