Help little Nixy!
Donation protected
Meet Ash, one of the most selfless souls in the whole world and one I'm fortunate enough to be able to call my best friend. Also meet Nixon, her adorable little man. Together with Ash's partner Danny this little famiglia of 3 makes the perfect pint size little family.
After what can only be described as one of the most traumatic births in history with both Ash and Nixon loosing life and being revived many times, this little family went on to not only have life long complications but also to discover that on top of the hell they had endured - little Nixon has Cystic Fibrosis.
What is Cycstic Fibrosis?
In Australia 1 in 2500 bubbas are born with CF. Those who have CF develop an abnormal amount of excessive thick and sticky mucus within the lungs, airways, and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections which lead to to irreversable damage. For Nixon this will mean not only frequent hospital stays, but also life long expensive medical bills and physiotherapy. One of the main medicines that will help Nixon is Orkambi, which is the only drug available in Australia to treat the underlying caus of CF. CF families can pay up to $250K per year out of pocket as unfortunately Orkambi is not on the PBS list (cue angry government rant here!)
As $250,000 for Orkambi is unfortunately unachievable, we have decided to put all funds raised towards a special Airway Clearance Vest that Cystic Fibrosis children can use for their daily physio. These vests look like a life jacket and vibrate and apply pressure to loosen the mucous in their lungs, much like we do with his current physio, but alot easier as he gets older and chooses to become uncooperative. These vests are valued at $15,000 and are also not covered by Medicare or any health insurance scheme. We are contacting the Australian Government via letter to keep pushing for Orkambi but in the mean time, prevention is all we've got till cure!
Ash and Danny are fantastic parents to Nixon and their endless love is immeasurable but anything we can do to help them and Nixon will be such a blessing.
Please donate anything you can, love makes the world go round and kindess is always free xx
After what can only be described as one of the most traumatic births in history with both Ash and Nixon loosing life and being revived many times, this little family went on to not only have life long complications but also to discover that on top of the hell they had endured - little Nixon has Cystic Fibrosis.
What is Cycstic Fibrosis?
In Australia 1 in 2500 bubbas are born with CF. Those who have CF develop an abnormal amount of excessive thick and sticky mucus within the lungs, airways, and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections which lead to to irreversable damage. For Nixon this will mean not only frequent hospital stays, but also life long expensive medical bills and physiotherapy. One of the main medicines that will help Nixon is Orkambi, which is the only drug available in Australia to treat the underlying caus of CF. CF families can pay up to $250K per year out of pocket as unfortunately Orkambi is not on the PBS list (cue angry government rant here!)
As $250,000 for Orkambi is unfortunately unachievable, we have decided to put all funds raised towards a special Airway Clearance Vest that Cystic Fibrosis children can use for their daily physio. These vests look like a life jacket and vibrate and apply pressure to loosen the mucous in their lungs, much like we do with his current physio, but alot easier as he gets older and chooses to become uncooperative. These vests are valued at $15,000 and are also not covered by Medicare or any health insurance scheme. We are contacting the Australian Government via letter to keep pushing for Orkambi but in the mean time, prevention is all we've got till cure!
Ash and Danny are fantastic parents to Nixon and their endless love is immeasurable but anything we can do to help them and Nixon will be such a blessing.
Please donate anything you can, love makes the world go round and kindess is always free xx
Organiser
Tenille Lawrence
Organiser
Lytton QLD
