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Hi, thanks for visiting my page.
I am taking part of a 24hour relay run on the 20th of July for the CF Trust, for my lovely and warrior niece Izzabella (6yr old) who suffers Cystic Fibrosis, at 11 days old she was diagnosed after losing 50% of her birthweight suffering from lethargy and constant bowel problems, cystic fibrosis is a life-shortening genetic condition that slowly destroys the lungs and digestive system. It can also lead to cf related diabetes later down the line due to pancreatic insufficiency .
Izzy starts every morning with over an hour of nebuliser treatments and acappella physiotherapy. In the USA many, use a beat vest which is expensive to purchase and unavailable in the UK on the N.H.S , the physiotherapy loosens and breaks up the mucus in her chest that, when built up, can make it nearly impossible to breathe. Over the course of the day she’ll take up to 25 to 40 Creon pills as well as vitamins and fortifiers in her food depending on how much she eats, to help her body absorb nutrients that are blocked by the mucus buildup. Since her diagnosis, the daily management of her disease has been a full-time job. For the whole family these are just her regular daily treatment when she has an infection or cough cold etc there are extra physio sessions on top of the twice daily routine aswell as antibiotics gastro intestinal problems means she needs medications for reflux and acid build up and suffers acute nasal blockages and rhinitis so meds for this too . At times she will spend long periods of time in hospital for I.v antibiotics and respiratory therapies . Izzy is an inspiration for all our family, she has to be in a permanent treatment that makes her feel tired but it can take all her energy to get through a school day but still has treatments and strict exercise regime to follow before nightly treatments commence too ,despite all of this she is a happy, outgoing, courageous and a very brave little girl.
It has always been my intention to raise awareness and raise funds for CF Trust since we knew more about this disease and how it affect other people. I would be grateful if you could spare some of your hard earned cash for a very worthwhile cause. You can donate by clicking this link
More about the desease.
Cystic Fibrosis is caused by a single faulty gene that controls the movement of salt in the body. In people with Cystic Fibrosis, the internal organs become clogged with thick, sticky mucus resulting in infections and inflammation making it hard to breathe and digest food.
Cystic fibrosis (CF) is a life-shortening genetic condition that slowly destroys the lungs and digestive system. The Cystic Fibrosis Trust is the only UK-wide charity fighting for a life unlimited, when everyone living with CF can look forward to a long, healthy life.
www.cysticfibrosis.org.uk