Halayna is a 7 year old little girl who lives in Lisle NY. Halayna has a rare disease called mitochondrial disease. 1 in 4000 people are effected by this disease and more children die from this then childhood cancer, so how is it no one knows about it? Mitochondrial is the power house of your body.
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
In Halaynas case she suffers , Eosinophilic Esophaitis (EE disease) dystonia (neurological condition) hyper responsive sensory processing disorder, glucose instability brought on by mitochondrial disease, GERD, migraine headaches, constant infections, kidney issues. chronic fatigue and pain, GI Issues, inability to regulate body temperature and is facing a g tube placement for feeding needs, We have a wonderful local team of doctors and have specialists in Albany as well, we also have an amazing support group of parents going through the same fight with their children.
September in Mitochondrial disease awareness week and we are holding a walk. It is called Halaynas hope mighty mito walkers. This will be held on September 17 2011 at Ostenango park from 9 to 1. We ask that you join us in this walk and ask others to pledge your walk. You can find out more information on Halayna her condition, her walk and much more on Halaynas Hope on facebook Just like the page to keep up to date. Also to get the forms needed for the walk event and much more valuable information. Help us make a difference and bring awareness to a disease that few have heard of
Amy Jones, Halayna's mom
if you have any questions or need to contact me please feel free to call me at 607-222-2988 or email me at momnthekids@gmail.com....thank you so much and i pray this story can be ran and the event in our wonderful town can take a stand for the kids who can't.
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