Staff from across CFA joined Chief Officer Russell Rees and Director Community Safety Lisa Sturzenegger to discuss implementing IFMP at CFA last month.
In true CFA style, participants were asked to pay to enter a ‘pop quiz’ on IFMP, with the proceeds to be donated to support two year old Erik Kelly (pictured below). Erik is one of only three children in Victoria with a rare inherited metabolic disorder called Cystinosis.
Please read Erik’s story and if you would like to donate to help find a cure for Erik's disease please contact Lisa Sturzenegger, Director Community Safety, on 9262 8406.
Erik's story
I am Erik Kelly and I was born in November 2005 with a rare inherited metabolic disorder called Cystinosis. It is so rare that there are only 2000 known cases in the whole world. My kidneys don’t work properly and I lose important electrolytes and large quantities of water through my urine. As a result, I am always thirsty and have a drink bottle with me wherever I go.
I also have rickets in my bones (my bones are soft) from the loss of phosphate and can’t walk yet. I have to take medication 14 times a day to balance my blood levels and to slow down the accumulation of cystin crystals in my body.
Due to the disease I have little appetite and receive most of my nutrition via a gastronomy tube straight into my tummy. But my mummy and daddy say it is very important that I keep trying to eat orally so I don’t forget to chew and don’t lose the ability to speak. When I do eat I like to have salty foods like chips and gravy.
I often feel unwell especially in the mornings and tend to vomit regularly around this time. The medications are very harsh on my little tummy and also make me feel sick. I am very sensitive to light because I have cystin crystals in my eyes as well. It hurts when I am playing outside or when light hits my eyes.
Although with medication some of the symptoms of this insidious disease can be controlled, cystinosis remain incurable. I will need a kidney transplant when my kidneys stop working and I have to take medication for the rest of my life.
If you would like to help me with my medication or would like to donate towards cystinosis research please contact Lisa Sturzenegger at CFA on 9262 8406.
In true CFA style, participants were asked to pay to enter a ‘pop quiz’ on IFMP, with the proceeds to be donated to support two year old Erik Kelly (pictured below). Erik is one of only three children in Victoria with a rare inherited metabolic disorder called Cystinosis.
Please read Erik’s story and if you would like to donate to help find a cure for Erik's disease please contact Lisa Sturzenegger, Director Community Safety, on 9262 8406.
Erik's story
I am Erik Kelly and I was born in November 2005 with a rare inherited metabolic disorder called Cystinosis. It is so rare that there are only 2000 known cases in the whole world. My kidneys don’t work properly and I lose important electrolytes and large quantities of water through my urine. As a result, I am always thirsty and have a drink bottle with me wherever I go.
I also have rickets in my bones (my bones are soft) from the loss of phosphate and can’t walk yet. I have to take medication 14 times a day to balance my blood levels and to slow down the accumulation of cystin crystals in my body.
Due to the disease I have little appetite and receive most of my nutrition via a gastronomy tube straight into my tummy. But my mummy and daddy say it is very important that I keep trying to eat orally so I don’t forget to chew and don’t lose the ability to speak. When I do eat I like to have salty foods like chips and gravy.
I often feel unwell especially in the mornings and tend to vomit regularly around this time. The medications are very harsh on my little tummy and also make me feel sick. I am very sensitive to light because I have cystin crystals in my eyes as well. It hurts when I am playing outside or when light hits my eyes.
Although with medication some of the symptoms of this insidious disease can be controlled, cystinosis remain incurable. I will need a kidney transplant when my kidneys stop working and I have to take medication for the rest of my life.
If you would like to help me with my medication or would like to donate towards cystinosis research please contact Lisa Sturzenegger at CFA on 9262 8406.
0 comments:
Post a Comment