Weʼve raised £120 to help my 20 yr old son to have to life he deserves, with the new tablet that'll help extend his live and less time in hospital.
- Torquay, UK
- Funded on Wednesday, 31st October 2018
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At the age of 5 months old Liam got diagnosed with cystic fibrosis he spend the first year of his life in hospital, once medication was managed we were told his life expectancy would be 18. But each year has been a bonus as he is at the age of 20 yrs old. That doesn't mean its been plain sailing with hospital visits for the best part of the year and constant pain throughout as Liam can't just go out for long walks without coughing and struggling for breath or even sometimes a hospital visit. No 20 yr old lad should feel so alone and depressed due to not knowing what his future holds.
But we have found and researched a tablet called ORKAMBI which is very effective and stops his hospital visits by 60% which increases his chances with a better quality of life.But for a years worth of medication it would come to a staggering total of £194,944.12 which obviously we don't have that sort of money to provide Liam with these 2x tablets a day rather 30 different kinds of medication. please take 5 mins out of your day just to read and be aware what CF is really like to live with on a day to day basis with the information i've provided below.
Information about the tablet and condition..........
Cystic fibrosis (CF) causes the lungs and digestive system to become clogged with thick, sticky mucus, and a transplant may be necessary if the lungs become extensively damaged. The average life expectancy of sufferers is 41 if they manage to get that far without a lung transplant.
The new twice-a-day tablet works by thinning the mucus, preventing damage and allowing the lungs to heal. Experts say that while Orkambi is not a cure for CF, the treatment could allow many patients to lead near-normal lives without the need for a transplant.Orkambi works to correct a faulty gene, known as the cystic fibrosis transmembrane conductance regulator (CFTR). The gene normally creates a protein that moves salt and water out of a cell, but when these proteins are missing or defective, a sticky mucus builds up in the lungs, causing infection, breathing difficulties and loss of lung function.
Orkambi works by allowing the protein within the cells to rise to the surface to move salt in and out of the cell, keeping a healthy balance of salt and water in the lungs and other organs. Research has shown that it reduces outbreaks of infection, and can cut the number of hospital admissions by more than 60 per cent.
Although it could prove effective for up to half of people with CF, Orkambi is not cheap. In the US, where it was licensed by the Food and Drug Administration in July, it costs $710 (about £470) per patient per day, though the European price is likely to be lower.
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About the fundraiser
Liam is 20 yrs old is currently live in the south hams, he the life and soul of a party and never fails to make everyone laugh, he loves his family dearly. Liam loves to be out with friends enjoying there company but to be honest its hard to write a bio on liam's life.