arianddannie

One foot, then the other….

In Uncategorized on November 30, 2015 at 8:14 am

As the close of 2015 approaches, we want to express our deep gratitude for the love, the hope, the encouragement and support that we have received this past year, and for the 15 years of steadfast friendship and love as we have faced the ups and downs of healing from Lyme disease.IMG_8384 (3) (2)

With help in 2014, Imani (Dannie) was afforded an amazing opening to this year, as depicted in the photo above from Easter 2015. She experienced her most vibrant period since she became ill in 2000, with the first few months graced with “Rehab Without Walls” coming to our home to offer Physical Therapy, Occupational Therapy, and Speech Therapy. This was augmented by a personal coach, tutor, acupuncture and a pain psychologist…. And for a brief while she was able to attend adaptive PE, attend 20’s groups at local churches to begin to be amongst peers, and perhaps the most meaningful, to do volunteer work at a local school for children 1-4 years old, who have been diagnosed on the autism spectrum. She found her calling, her bliss…. with enlivened dreams for a future of being fully engaged in life, with others, with giving back.

I am deeply sorry to share that in the late spring Imani began to decline – summer lab work found her infection to be severely active again, with disabling pain and myriad symptoms returning and, driving her back to bed, and disrupting the progress she worked so hard to gain.  Having faced the laborious red tape of insurance/providers, we hope she will begin treatment this next week. It has taken TEN WEEKS to secure the IV treatment she needs to fight back this spike of infection. We believe that, while very disturbing, this is temporary, and her body “knows” how to get well again! Her desperate  goal for 2016 is to return to India for her 2nd round of human embryonic stem cell transplant, so that she might realize the healing she has witnessed in Ari, who has had the privilege of receiving 3 rounds of HESC transplant. Now that she has tasted a bit of life again, her resolute goal is to remain in this “flare” as briefly as possible and return to life.

Ari continues to put one foot in front of the other, a student at Foothill, working his way through general education so that he might transfer to a four year university. He is a bit weary of the process, wanting desperately to be self-sufficient and in the work world as soon as possible. This has been a very arduous process, starting with one class in 2009 and plugging away at it as his health allowed—getting his body going, and re-enlivening his neuro-pathways to allow learning to occur. He is amazingly persistent and stalwart. With HESC treatment, he has been able to attend school 5 days a week… with nearly perfect attendance and earning A marks consistently. He remains challenged with neurological/cognitive symptoms and slowed processing and requires extra time to meet the demands of his course work. He follows a daily self-care regimen and is diligent about continued healing.  Ari has joined a student organization, serving as co-vice president, of Fund the Future, an organization that funds the education of students and provides micro-loans to cottage industries in developing countries. Along with his passion for photography, he has enthusiastically embraced this commitment. The students traveled to India this past summer to assist a school that they have provided funds Ari was able to travel, not as a patient, but as a student!!! That said, he did take the opportunity to visit NuTech, the clinic where he had received HESC transplant, and received 4 days of treatment!

Kate continues working as a department manager at a local hospital, and has a general psychotherapy practice in Redwood City, CA  in which she is honored to serve persons who are facing chronic and life-threatening illness, including tick-borne illnesses.

 

“When you come to the edge of all the light you know,
and are about to step off into the darkness of the unknown,
FAITH is knowing one of two things will happen:
There will be something solid to stand on or you will be taught how to fly.” 
― Barbara Winter

 

 

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