Quality for simmy
Donation protected
Hello my name is Rachel, and am rasising funds for my neice Simone to buy her an Hi-Lo bed.
At the age of 2 was diagnosed with nemaline myopathy.
Nemaline Myopathy is form of muscular dystorphy which weakens the muscles. For years simone has been back and forth to the doctors with conditions caused by the myopathy.
By the time Simone was 16 she had undergone major surgery to recorrect scoliosis of the spine, it basically look like someone had whacked her head of and placed it on her shoulders. The surgery took over 8 hours, she needed blood transfusion, they collapsed her lungs just to put in two harrington rods down her spine.
Since this surgery simone has undergone constant physio and battles with her lungs.
By the time Simone was in her 20's she was then diagnosed with Bronchiactasis which is a condition that constantly produces sputum. Due to the myopathy simones lungs do not function probably so therfor was hospitalised many times with pneumonia. A few of these times were ICU visits and we were called in to say our goodbyes.
For some reason Simone has the strength to fight.
By late twenties Simone got married something the doctors told her wont happen as she probably would not live past 25. But one thing they definitely can not have is children.
Not long after Simone was placed on bi-bap machine to assist with breathing at night. During this whole time she had been working for telstra for 10 years.
Late 2013 Simone was then admitted to hospital for pneumothraxes, which is a hole in the lung causing it to collapse. By early 2014 Simone was upto her 4th admittance with another pneumothorax, in which this time she had a medical procedure done to reinflate the lung. By this time Simone was diagnosed with hardening of the lung, there is no reason or how this has happened, but it has left Simone with only 15% lung capacity.
By mid 2014 Simone had become fully reliant on the Bi-bap machine and was recommended to retire from work.
I have done 2 fundraisers for simone to assist with costs associated with all her medicals but need help to raise this money for a medical Hi-Lo Bed.
In May 2015 Simone had a tracheostomy done to give her quality of life not quantity. Simone wanted her face back.
We have had some set backs, and yes Simone is terminal but whilst she is here we are trying to give her the best possible life. The Hi-Lo Bed will assist with physio therapy required for her twice a day which is done by family.
Please help me, help Simone.
Nemaline Myopathy runs in my family it is a condition that has affected my sister and nephew as well.
At the age of 2 was diagnosed with nemaline myopathy.
Nemaline Myopathy is form of muscular dystorphy which weakens the muscles. For years simone has been back and forth to the doctors with conditions caused by the myopathy.
By the time Simone was 16 she had undergone major surgery to recorrect scoliosis of the spine, it basically look like someone had whacked her head of and placed it on her shoulders. The surgery took over 8 hours, she needed blood transfusion, they collapsed her lungs just to put in two harrington rods down her spine.
Since this surgery simone has undergone constant physio and battles with her lungs.
By the time Simone was in her 20's she was then diagnosed with Bronchiactasis which is a condition that constantly produces sputum. Due to the myopathy simones lungs do not function probably so therfor was hospitalised many times with pneumonia. A few of these times were ICU visits and we were called in to say our goodbyes.
For some reason Simone has the strength to fight.
By late twenties Simone got married something the doctors told her wont happen as she probably would not live past 25. But one thing they definitely can not have is children.
Not long after Simone was placed on bi-bap machine to assist with breathing at night. During this whole time she had been working for telstra for 10 years.
Late 2013 Simone was then admitted to hospital for pneumothraxes, which is a hole in the lung causing it to collapse. By early 2014 Simone was upto her 4th admittance with another pneumothorax, in which this time she had a medical procedure done to reinflate the lung. By this time Simone was diagnosed with hardening of the lung, there is no reason or how this has happened, but it has left Simone with only 15% lung capacity.
By mid 2014 Simone had become fully reliant on the Bi-bap machine and was recommended to retire from work.
I have done 2 fundraisers for simone to assist with costs associated with all her medicals but need help to raise this money for a medical Hi-Lo Bed.
In May 2015 Simone had a tracheostomy done to give her quality of life not quantity. Simone wanted her face back.
We have had some set backs, and yes Simone is terminal but whilst she is here we are trying to give her the best possible life. The Hi-Lo Bed will assist with physio therapy required for her twice a day which is done by family.
Please help me, help Simone.
Nemaline Myopathy runs in my family it is a condition that has affected my sister and nephew as well.
Organiser
Rachel M Popowski
Organiser
Osterley, NSW