My whole life, I have watched my sister suffer and endure great hardship when it comes to her health battles. Being diagnosed at the age of six years with a rare genetic disorder called MLASA (Mitochondrial Myopathy Lactic Acidosis Sideroblastic Anemia). Mitochondrial Myopathy is a progressive muscle weakness which affects the whole body, her muscles do not produce enough oxygen to the energy cells and she also gets very high amounts of lactic acid in her muscles with minimal movement. Sideroblastic anemia is a blood disorder where her body does not produce enough normal healthy red blood cells meaning she requires regular blood transfusions every 4 weeks which are keeping her alive. A big shout out to all the blood donors who are truly giving the gift of life! There is no cure or treatment for mitochondrial myopathy and as my sister gets older her condition will continue to deteriorate causing her to become a lot weaker and affecting her quality of life.
What it’s like to live with a form of mitochondrial disease? Everyday is an effort! Her muscle condition causes her to always feel tried and fatigued. She cannot walk far distances without getting tired so she does use a wheelchair to assist her getting around at times. She requires assistance in many everyday activities but she always strives to try and not give up even though she faces a lot of challenges.
We also had a brother, who suffered and was diagnosed with the same form of disease, he passed away sadly at the age of 18.
Rita is now turning 30 this year. This is why I have decided to start this campaign and make her 30TH birthday this year, this extra bit special. I would like to raise funds for my birthday and donate it to a cause close to her heart. I know these funds will go towards a very special cause and help raise awareness about mito disease which not many people are aware of. I hope our story encourages those who can to also donate blood, as it does truly save lives! If it wasn’t for blood donors my sister would not be here today. I am very blessed and grateful that my sister has been around and is celebrating her 30TH birthday this year.
We love you Rita