She died on November 13, 2011 at the age of 26.5 Months, in her favorite place: Her mother's arms.
She first started showing symptoms in February of 2010 at the age of 4 months. This rare disease causes demylination in the brain due to lack of a specific enzyme. 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 outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and average life expectancy is less than 2 years. I have followed the story of little Anaya since before she passed away. Her story is moving, inspirational, and can be seen here.
Anaya lives on. She did a great job while she was here on Earth, and so many babies are being helped now because of her. In her life, albeit too brief, Anaya has accomplished so much. She has affected people worldwide, including myself, and her mother Camara is doing amazing things out of love for Anaya.
Since Anaya crossed the Rainbow Bridge, Camara has done what many parents wouldn't have the strength to do: She has channeled her grief in a beautiful way, and in honor of Anaya, is now dedicated to helping other families who have suffered from loss or are coping with a child with serious medical issues. Camara has been to Italy, to Mexico, and through her visits, compassion, and even just her words, she is touching the lives of people every single day.
While I am blessed to have 3 healthy children, I do know the pain of losing a child. I have had 4 miscarriages, each one absolutely devastating. I cannot imagine the pain of losing a living child, but my miscarriages were still losses, and they changed me as a person. I lost babies, too. While they never made it to my arms, they will always be a piece of my heart and soul. Camara recently made a video to help comfort parents who have gone through the unthinkable. Her words are very comforting, and with her permission, I am sharing.
To learn more about Anaya and Camara's efforts to help other children and families around the world, please visit the following sites. Feel free to share! Anaya's story is meant to be shared.