Find A Cure For Kailyn and Charis
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Imagine having two daughters, and then discovering that there is only a 50% chance of them living past ten years old, and 20% chance of them living to twenty years old. At the ages of three and five, they are running out of time to find a cure.
Mitochondrial disease is not well known, even to doctors. There is not much treatment for kids like Kailyn and Charis, because there isn't enough money to research a cure to save childrens lives. And not only will finding a cure help all these kids, but it also helps anyone with diseases including Autisim, Parkinson's disease, diabetes, Alzheimers, cancer, obesity and infertility, as it is all linked to mitochondrial disfunction.
This is the story of the Whaley family:
"On May 10, 2012, 3 year old Kailyn, was diagnosed with Mitochondrial disease, a disease that could eventually lead to her early death. On August 30, 2012, we learned that our other daughter, Charis (1) carried the same ilness.
Shortly after my husband and I married, we were blessed with the news that I was pregnant. After an easy pregnancy, I gave birth to a beautiful, seemingly healthy baby girl-- Kailyn. But when Kailyn was one year old, my husband and I became concerned: she could not walk unassisted, her talking consisted of single syllable sounds, she had acid reflux and asthma and she reflexes were very slow.
Friends and family assured us that she was fine, and we waited until Kailyn was 18 months old to seek medical help. Doctors conducted a long series of tests to figure out what was wrong. It took us two and a half years of MRIs and x-rays, two and a half years of invasive tests and countless specialists. When all these assessments finally ended, my husband and I were devastated to learn our daughter has NARP (Neuropathy, Ataxia, and Retinitis Pigmentosa), a mitochondrial disease that has a wide spectrum of symptoms and is known as a "silent killer."
We walked out of the office in shock. In a matter of seconds, our hearts were ripped out-- something we yearn for a way to mend. Like all moms, I had hopes for my children. I hoped, expected really, that my children would be healthy, make friends, go to college and have families of their own. But in the face of MD, these hopes are dreams-- the reality is that my children will be exceedingly lucky to live past high school and this disease halts intellectual development beyond age 16. Many days we don't feel very lucky. The doctors' appointments, the exhaustion and the fear can wear on us. But we are lucky. We get to hear our daughters say "I wuh yuh," watch them laugh when we make silly faces and see them light up when we enter the room. Many other "mito" kids can't watch their favorite cartoons, swallow their food, or even roll over.
Yet life goes on. And each day our daughters get the best of us. we do fun stuff with them. We laugh and giggle with them. We strive to make every precious moment with them count-- because we don't know when the last one will be.
When we see our beautiful angels smile, laugh and play it moves us out of our sadness. We cherish our girls every day-- they are our heroes. They push us through our struggles and drive us to be the best parents we can. In that spirit, I refuse to be just a parent. I am a parent, and I am a researcher. I am a parent, and I am an activist. I am a parent and I am an advocate. For my girls, and for the other parents out there facing the same struggles my husband and I face, I must do all these things and I must do them well. If I can do that, then one day there will be an end to this disease. Please join our family, and families like us, as we fight for our children, their health and their future."
Mitochondrial disease is not well known, even to doctors. There is not much treatment for kids like Kailyn and Charis, because there isn't enough money to research a cure to save childrens lives. And not only will finding a cure help all these kids, but it also helps anyone with diseases including Autisim, Parkinson's disease, diabetes, Alzheimers, cancer, obesity and infertility, as it is all linked to mitochondrial disfunction.
This is the story of the Whaley family:
"On May 10, 2012, 3 year old Kailyn, was diagnosed with Mitochondrial disease, a disease that could eventually lead to her early death. On August 30, 2012, we learned that our other daughter, Charis (1) carried the same ilness.
Shortly after my husband and I married, we were blessed with the news that I was pregnant. After an easy pregnancy, I gave birth to a beautiful, seemingly healthy baby girl-- Kailyn. But when Kailyn was one year old, my husband and I became concerned: she could not walk unassisted, her talking consisted of single syllable sounds, she had acid reflux and asthma and she reflexes were very slow.
Friends and family assured us that she was fine, and we waited until Kailyn was 18 months old to seek medical help. Doctors conducted a long series of tests to figure out what was wrong. It took us two and a half years of MRIs and x-rays, two and a half years of invasive tests and countless specialists. When all these assessments finally ended, my husband and I were devastated to learn our daughter has NARP (Neuropathy, Ataxia, and Retinitis Pigmentosa), a mitochondrial disease that has a wide spectrum of symptoms and is known as a "silent killer."
We walked out of the office in shock. In a matter of seconds, our hearts were ripped out-- something we yearn for a way to mend. Like all moms, I had hopes for my children. I hoped, expected really, that my children would be healthy, make friends, go to college and have families of their own. But in the face of MD, these hopes are dreams-- the reality is that my children will be exceedingly lucky to live past high school and this disease halts intellectual development beyond age 16. Many days we don't feel very lucky. The doctors' appointments, the exhaustion and the fear can wear on us. But we are lucky. We get to hear our daughters say "I wuh yuh," watch them laugh when we make silly faces and see them light up when we enter the room. Many other "mito" kids can't watch their favorite cartoons, swallow their food, or even roll over.
Yet life goes on. And each day our daughters get the best of us. we do fun stuff with them. We laugh and giggle with them. We strive to make every precious moment with them count-- because we don't know when the last one will be.
When we see our beautiful angels smile, laugh and play it moves us out of our sadness. We cherish our girls every day-- they are our heroes. They push us through our struggles and drive us to be the best parents we can. In that spirit, I refuse to be just a parent. I am a parent, and I am a researcher. I am a parent, and I am an activist. I am a parent and I am an advocate. For my girls, and for the other parents out there facing the same struggles my husband and I face, I must do all these things and I must do them well. If I can do that, then one day there will be an end to this disease. Please join our family, and families like us, as we fight for our children, their health and their future."
Organizer
christina whaley
Organizer
Jamul, CA
