A Heartfelt Mission Completed

The moment I decided to start The Faces of Ankylosing Spondylitis project I knew exactly who Face 500 would be, the only problem was I had no clue what he looked like and no idea how to make contact in order for his story to be told, especially since he was from the United Kingdom.

On October 8, 2009 I read an article about a young man who had passed away who was only 27 years old, his name was Stuart.

I would later find out that he was the same Stuart I knew from a support forum I belong to. I always admired his courage in being real and honest about what he was feeling and respected him deeply for that. He touched my heart in many ways, and two years later he is still never far from my thoughts.

So I set out on a mission to find his family, not only to ask them to share Stuart’s story with us, but to tell them that Stuart was important to us and that we cared for him and still do.

It was important for me to do this, so I spoke to my dear friend Ross (Face 185) asking if he would help me locate Stuart’s family. He was able to locate an address and number, but no one ever answered the phone, so after several months I decided to ask another dear friend of mine, Mick (Face 11) if he would help me since he was located closer to where Stuart was from.  He was able to supply me with a newspaper article that included a picture of Stuart, and another address.

I finally knew what Stuart looked like.

I eventually reached out to the church where Stuart’s funeral services were held, they were so kind and helpful. They took a letter I had written to the address that they had on file, but it appeared the family had moved. I emailed many newspapers trying to place an ad in the paper to locate his family. I was losing hope that I would ever locate them.

I would randomly call the numbers that I had with no results, until May 26, 2012.

I spoke with Stuart’s mother for some time; the call was bittersweet for me.

My hearts mission was completed, but not in the way that I had dreamed of, but in the way it was meant to be, sometimes there are no words to find to tell one’s story, because they are hidden so deeply inside a mother’s broken heart.

So I decided to share my true reasons  for starting the Faces of Ankylosing Spondylitis.

I didn’t start Faces to raise awareness about Ankylosing Spondylitis.

I didn’t start Faces to raise money for research.

I didn’t start Faces to find a cure.

I didn’t start Faces to become a Health Activist or Advocate.

I started Faces for Stuart,

The Stuart’s of the past,

The  Stuart’s of today,

The Stuart’s of the future,

and the Stuart inside of me.

I wanted the world to know the TRUTH  about Ankylosing Spondylitis, but most of all I wanted those who suffer and survive with Ankylosing Spondylitis to know there are real people out there who honestly understand and care, and from this day forward they are never truly alone.

The reason I picked Face 500 for Stuart is because it’s the middle of my goal.

A life with Ankylosing Spondylitis often leaves that person feeling as if they are stuck in the middle.

We live a life  of being in the middle of good or bad days, participating or watching, acceptance or rejection, happiness or depression, living or existing, suffering or surviving, this is the life of a person who has Ankylosing Spondylitis.

I want to thank all of you, who have submitted your story for the Faces Project. I want you to know how much I admire and respect each and every one of you.

May you all find peace and joy in your journey called life.

With much love and respect,

Sincerely Cookie (Face 62)

Here is to the next  500 courageous Faces of Ankylosing Spondylitis

A S Face 500

Please click the link above.

7 Responses to “A Heartfelt Mission Completed”

  1. Cookie,
    This brought tears to my eyes, as well as Face 500 and all the other ones I have read. You have created a place where we can feel hope through our own trials and not feel alone. Chronic Illness can be so isolating as you feel that no one else understands. Here you have a created a whole website of people who DO understand. They understand the pain, the appointments, the missed activities… Thank you! From the bottom of my heart… THANK YOU

    • Dear Sara,
      Thank you so much, for always being there for me, but most of all for getting me. Thank you, from the bottom of my heart.
      It is my pleasure and honor, to be blessed with the trust to be allowed to create this site and I will be forever grateful.

      Love you girl

  2. Yes, this too moved me to tears. You Cookie, have a servants heart and that was a big undertaking to find that family. So many families never know of our suffering nor do they know the large impact their loved ones have made on peoples lives.

  3. So sweet of you to diligently search for Stuart. I’m so sorry about his passing. May he live forever in the peace.

  4. An amazing quest Cookie. When I looked at Stuart’s face on Face 0500, and saw this handsome young man, my heart was touched but saddened. May Stuart live on in each of our hearts~

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