Anaya may be gone, but we continue to fight on.
Baby Anaya was diagnosed in May 2010 with Infantile Krabbe Leukodystrophy. She first started showing symptoms in February of 2010 at the age of 4 months. This disease causes demyelination in the brain due to lack of a specific enzyme required to produce myelin. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy. The life expectancy of these children is 13 months.
Anaya lived to be 26.5 months old due to excellent care and lots of love. She died November 13, 2011. She has influenced thousands of people around the world. Her mother Camara Cassin, is collaborating with others to create "Anaya's Angels" a non-profit society that will educate about Krabbe Leukodystrophy and raise awareness about the need for Universal Newborn Screening, which would allow parents the option of testing for this disease, and others at birth. If Anaya had been tested she would still be alive today. New research holds promising treatments but these babies don't get that chance unless they've been tested.
Krabbe disease is treatable if it is tested for at birth. Only 2 states in North America currently test for it.
To learn more about Krabbe Leukodystrophy please visit www.huntershope.org
Camara keeps a blog about Anaya's life and legacy at www.healinganaya.blogspot.com
Starting with Canada and the US we are out to make a difference and SAVE BABIES.
All you have to do is copy my little message then click one of the links below. The message will automatically be sent to the minister of health for Canada or your province of choice. You will be asked to give your name and email address. It's like signing a petition.
Dear Minister of Health,
Recently a young girl died in the Children's Hospital in Vancouver. Her name was Anaya. She died from a brain disease called Krabbe Leukodystrophy. She was two years old. The horror of this tragedy is not in her death - but in the absence of testing for this disease at birth. Krabbe Leukodystrophy is treatable with umbilical cord blood transplant, and is in the starting phases of clinical testing for gene therapy. These treatments dramaticly improve the quality of life for these children and reduce costs on the medical system.
Anaya's parents estimate that in her 2 years her health expenses cost health insurance almost $500,000. This could have been prevented with the same heel-prick blood test already done on newborns.
This disease, and other leukodystrophies, are mostly recessive genetic disorders. That means that there is usually no history of the disease in the family. It just appears. Without testing and treatment the baby just starts losing their abilities, sight, hearing, speech, ability to move. Then they die.
The states of New York, Illinois and New Mexico have already enacted legislation regarding testing for this disease. I encourage you to research this matter and remember - we just want to save babies.
Please contact info@healinganaya.com and be sure to visit www.healinganaya.com to learn about this brave little girl and how her death is going to change the world.
Recently a young girl died in the Children's Hospital in Vancouver. Her name was Anaya. She died from a brain disease called Krabbe Leukodystrophy. She was two years old. The horror of this tragedy is not in her death - but in the absence of testing for this disease at birth. Krabbe Leukodystrophy is treatable with umbilical cord blood transplant, and is in the starting phases of clinical testing for gene therapy. These treatments dramaticly improve the quality of life for these children and reduce costs on the medical system.
Anaya's parents estimate that in her 2 years her health expenses cost health insurance almost $500,000. This could have been prevented with the same heel-prick blood test already done on newborns.
This disease, and other leukodystrophies, are mostly recessive genetic disorders. That means that there is usually no history of the disease in the family. It just appears. Without testing and treatment the baby just starts losing their abilities, sight, hearing, speech, ability to move. Then they die.
The states of New York, Illinois and New Mexico have already enacted legislation regarding testing for this disease. I encourage you to research this matter and remember - we just want to save babies.
Please contact info@healinganaya.com and be sure to visit www.healinganaya.com to learn about this brave little girl and how her death is going to change the world.
Alberta Ministry of Health
does not have an email. You have to fill out a comment form at this link http://alberta.ca/home/Feedback.cfm
Saskatchewan Ministry of Health
does not have an email. You have to fill out a comment form at this link.http://www.gov.sk.ca/Contact
does not have an email. You have to fill out a comment form at this link http://alberta.ca/home/Feedback.cfm
Saskatchewan Ministry of Health
does not have an email. You have to fill out a comment form at this link.http://www.gov.sk.ca/Contact
