Blaire's Story; I Breathe, I Hope
Donation protected
In 2003 we were sat in a classroom with Blaire (our best friend of over 20 years) as our science teacher confidently told the class that children born with Cystic Fibrosis rarely lived past the age of 18, twelve years on and a 27 year old Blaire continues to prove this statistic wrong.
Blaire was diagnosed with Cystic Fibrosis (CF) when she was 18 months old. This was devastating for her family who had no idea what CF was. CF is a genetic disorder that causes the over-production of abnormally thick mucus, that might sound pretty unthreatening but this mucus leads to the blockage of the pancreatic ducts, intestines, and bronchi, causing endlessly recurring respiratory infections and various other complications.
By 1999 CF was causing Blaire’s liver to fail and she underwent a liver transplant at the age of 11. This life saving operation brought on another complication in the form of diabetes. In 2011 Blaire’s kidneys decided it was their turn for some attention when they went into renal failure. Blaire was admitted to intensive care and placed on dialysis. This was an extremely scary time for everyone who cares for her as we did not know what the outcome would be. Once again her spirit came through and she recovered enough to be transferred to the CF unit, albeit 2 stone heavier due to the fluid retention caused by her failing kidneys. It was mentioned by the staff on the CF unit at this time that even though Blaire was seriously ill she never complained and was always smiling and laughing.
Being in and out of hospital has become a normal part of Blaire’s life and the local CF doctors and nurses have grown to love, revere and almost fear her never give in attitude!
Blaire’s life is a relentless routine of daily nebulisers, tablets, vitamins, dietary supplements, physio, blood sugar testing, the use of supplementary oxygen and a Non Invasive Ventilator. There are also regular hospital appointments, IV antibiotics and tests to check and maintain her well-being. This she takes in her stride and, despite the massive amounts of pressure she is under, Blaire still manages to maintain her immaculate home cleaning habits and be dedicated to her two Pugs, Wilbur and Winnie. At her lowest Blaire has said her dogs are the only reason she has for getting up in the morning.
Blaire has worked tirelessly to retain her independence and a ‘normal’ lifestyle. Asking for help is a massive step for Blaire to take. It means openly acknowledging her CF and allowing people to see her as different, and different she is, not because of her CF but because of her incredible outlook on life. Blaire is the most straight-talking and realistic person you will ever meet, she is hilariously dippy and has the most infectious laugh in Sheffield but most of all she is not, and never will be, a victim of CF.
Recently Blaire decided to commit her positive attitude to ink when she got a tattoo with the Latin phrase Dum Spiro Spero, which translates as While I Breathe I Hope. This message reminds both Blaire and those close to her how important it is to focus on the good things in life and never to give up hope.
Despite the positive outlook and hope we all have, Blaire's lungs continue to let her down. In 2013, Blaire took the big step of requesting to be added to the lung transplant list. Sadly, she was deemed unfit for transplant. This was a huge blow to Blaire and her family as there is currently no other suitable treatment for Blaire in the UK and the only option was to sit tight and hope for some medical advances. However, with a lung function of less than 20%, Blaire does not have the luxury of time.
After lots of research and hard work, a potentially life changing stem cell treatment was found which aims to replace the damaged cells to regenerate Blaire's lungs. Thankfully, after lots of testing, Blaire's mum was found to be a suitable match and Blaire has been approved for the treatment. The treatment has not yet been approved in the UK but it is being offered privately in the Dominican Republic.
CF sufferer Roisin Kelleher was the first UK citizen to receive the treatment in the Dominican Republic and her lung function has improved significantly resulting in less frequent IV’s and improved physiotherapy results.
This is Blaire’s only option to improve her lifestyle and extend her life and we (Blaire’s friends and family) have been tasked with the challenge of raising the £50,000 needed to pay for the treatment. Due to Blaire’s rapidly declining health we have a limited window to get the treatment and are working to raise the money by the end of March.
Your support and donations towards this ground-breaking treatment for Blaire are greatly appreciated. Any donations, however big or small, will take us one step closer to giving Blaire the quality of life she has hoped for, for so long.
Blaire was diagnosed with Cystic Fibrosis (CF) when she was 18 months old. This was devastating for her family who had no idea what CF was. CF is a genetic disorder that causes the over-production of abnormally thick mucus, that might sound pretty unthreatening but this mucus leads to the blockage of the pancreatic ducts, intestines, and bronchi, causing endlessly recurring respiratory infections and various other complications.
By 1999 CF was causing Blaire’s liver to fail and she underwent a liver transplant at the age of 11. This life saving operation brought on another complication in the form of diabetes. In 2011 Blaire’s kidneys decided it was their turn for some attention when they went into renal failure. Blaire was admitted to intensive care and placed on dialysis. This was an extremely scary time for everyone who cares for her as we did not know what the outcome would be. Once again her spirit came through and she recovered enough to be transferred to the CF unit, albeit 2 stone heavier due to the fluid retention caused by her failing kidneys. It was mentioned by the staff on the CF unit at this time that even though Blaire was seriously ill she never complained and was always smiling and laughing.
Being in and out of hospital has become a normal part of Blaire’s life and the local CF doctors and nurses have grown to love, revere and almost fear her never give in attitude!
Blaire’s life is a relentless routine of daily nebulisers, tablets, vitamins, dietary supplements, physio, blood sugar testing, the use of supplementary oxygen and a Non Invasive Ventilator. There are also regular hospital appointments, IV antibiotics and tests to check and maintain her well-being. This she takes in her stride and, despite the massive amounts of pressure she is under, Blaire still manages to maintain her immaculate home cleaning habits and be dedicated to her two Pugs, Wilbur and Winnie. At her lowest Blaire has said her dogs are the only reason she has for getting up in the morning.
Blaire has worked tirelessly to retain her independence and a ‘normal’ lifestyle. Asking for help is a massive step for Blaire to take. It means openly acknowledging her CF and allowing people to see her as different, and different she is, not because of her CF but because of her incredible outlook on life. Blaire is the most straight-talking and realistic person you will ever meet, she is hilariously dippy and has the most infectious laugh in Sheffield but most of all she is not, and never will be, a victim of CF.
Recently Blaire decided to commit her positive attitude to ink when she got a tattoo with the Latin phrase Dum Spiro Spero, which translates as While I Breathe I Hope. This message reminds both Blaire and those close to her how important it is to focus on the good things in life and never to give up hope.
Despite the positive outlook and hope we all have, Blaire's lungs continue to let her down. In 2013, Blaire took the big step of requesting to be added to the lung transplant list. Sadly, she was deemed unfit for transplant. This was a huge blow to Blaire and her family as there is currently no other suitable treatment for Blaire in the UK and the only option was to sit tight and hope for some medical advances. However, with a lung function of less than 20%, Blaire does not have the luxury of time.
After lots of research and hard work, a potentially life changing stem cell treatment was found which aims to replace the damaged cells to regenerate Blaire's lungs. Thankfully, after lots of testing, Blaire's mum was found to be a suitable match and Blaire has been approved for the treatment. The treatment has not yet been approved in the UK but it is being offered privately in the Dominican Republic.
CF sufferer Roisin Kelleher was the first UK citizen to receive the treatment in the Dominican Republic and her lung function has improved significantly resulting in less frequent IV’s and improved physiotherapy results.
This is Blaire’s only option to improve her lifestyle and extend her life and we (Blaire’s friends and family) have been tasked with the challenge of raising the £50,000 needed to pay for the treatment. Due to Blaire’s rapidly declining health we have a limited window to get the treatment and are working to raise the money by the end of March.
Your support and donations towards this ground-breaking treatment for Blaire are greatly appreciated. Any donations, however big or small, will take us one step closer to giving Blaire the quality of life she has hoped for, for so long.
Organizer
Andy Cargill
Organizer
