Thursday, September 1, 2011

A Summary of Summer!

written by Natalie Degoey.

It began with a trip to the Humuh Monastery, where Anaya met a real live enlightened being, the Wisdom Master or “living Buddha” of the monastery, who had many wonderful things to say about Anaya’s purpose in this life.

While Anaya and family were visiting the interior of BC, she developed pneumonia which was misdiagnosed as a cold, and developed over the next weeks into a very serious and life-threatening illness. Her family decided, with input from her doctors, to take her home for her final days. This decision caused tension with the nurse who had been helping the family, and ultimately they ended up without any nursing care, a situation that still is not resolved. We almost lost her a couple of times, but are happy to report that she has made a full and miraculous recovery, thanks in large part to the tireless care and attention provided by her entire family, and also thanks to all the love and prayers that she received from her supporters at The Anaya Initiative. We truly believe that this focusing of so much positive energy on one little being is a huge part of what has kept her going for so much longer than most babies with her condition!

As a testament to how she is thriving, Anaya was recently lucky enough to celebrate her Second Birthday!! This is truly incredible, as most Krabbe babies are not allowed to stay with their families on earth for longer than one year, never mind two. Anaya is a miracle baby, and in honour of that, her family celebrated in style, with a big Birthday Bash at Lakeside Park in their hometown of Nelson, BC. Almost 100 people attended in person, and thousands were there in spirit, from all over the world! Fundraising consisted of a live silent auction, and several concurrent online events, including auctions run by JustaWeeBab and Blissful Creations by Lyz, and an ebay auction of a one-of-a-kind Bamboletta Doll. These Waldorf dolls are prized by collectors, and the adorable Leila brought in over $1500 all on her own!

Thanks to the generosity of all Anaya’s international family, we were able to raise enough money for Anaya's care and to begin to plan Anaya’s next adventure, Anaya’s Walk to Save Babies, details of which will be shared over the coming weeks. It involves a tour from Nelson to Vancouver, and down the coast into Washington, Oregon, and California, spreading awareness about newborn screening for Leukodystrophies, and teaching kids about people living with disabilities! Along the way, Camara will be blogging about their adventures, with the goal of creating a book about their journey. To kick off Anaya’s Walk, she will be receiving a week of care and attention at Canuck Place Hospice and BC Children’s Hospital in Vancouver. There, Anaya will have some assessments done, and the rest of the family will get some respite time to focus on preparations for the next leg of their journey together!

Anaya will be visiting friends all along the West Coast of Canada and the US, so if you would like to meet her and her family, or if you know of a school or other organization that would be interested in learning more about Leukodystrophy (and other demyelinating conditions) or living with disabilities, please get in touch.
You can reach us at 1-888-936-9930 or by email info at healinganaya dot com.

Packages can be sent to our administrator Natalie Degoey (who will forward them to us) at: #5, 6670 Rumble St, Burnaby BC V5E 4L4.

Mail can still be sent to 1111 Hall Mines Rd, Nelson BC. V1L 1G5

1 comment:

  1. Have you been able to connect with an extended medical provider who may be able to provide insurance in the even that a hospital stay or doctors appointment is required while you are in the US....


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