Tuesday, June 15, 2010

Mounier-Kuhn Syndrome - another appears

An email came into our inbox one day a few weeks ago now, this one asking for our help.

So unexpected, as everything has been throughout this journey...

Would we offer our information, an ear, or any type of assistance possible for another who had been in contact with the "Just Breathe Foundation" in Florida, with this plea.

This research foundation's entire purpose is to fund raise for MKS research, and help to connect others together. It was founded by family and friends of their 38 year old friend, who passed away from pulmonary failure from (the same lung disease my husband suffers from) two years ago.

Of course, we assured the founders our personal contact information could be passed along to the man posing the inquiries.

Stunned at first, it turned out the actual man inquiring was the father of a seven year old little girl who was newly diagnosed with the same disease, so very rare, especially for a female and so young!

Then, even more amazing, I stared for a long time until it sunk in; they shared our same area code in their telephone number. Oh sure, it could have been anywhere in our province, still, so close and yet, possibly not.

We spoke on the telephone, myself and the little girl's father, a highly emotionally charged conversation to be sure, as expected, with many hearts hurting for our loves ones who suffer breathing issues, drug responses, and lousy prognosis for their futures.

At the end of our conversation, of all places, this family lives only 1/2 hour away from us! We will meet after their daughter's bronchoscopy next week.

Ten long years have passed and not until this year have we located and spoken with any other known patients afflicted with this same disease.

Now, we are four; three alive, one not.

Now, we are connected. And, now we will continue to proceed with cheering and helping one another as best we can.

We were so hoping for this all along, the very reason why it was divulged on this blog some time ago in the first place, dreaming for such a connection to another. None came, for so long.

And then one day just a little over two months ago, there it was, our first "live" contact!

One might call it success.

Another might call it serendipitous fate.

I call it an answer to prayer, for we are no longer alone on this journey, though my husband's case is much more advanced than the others.

Divulging my husband's disease on this blog was a joint decision, his first and foremost for the sole purpose of finding another, and mine to find more support perhaps in the medical field.

Maybe still, posting this bit of information here might be an answer to prayer for several others out there who are also yearning to connect, though for some reason it can't ever mend or stop my heart from hurting for those we meet along the way, nor my husband when a simple breath of air can't be grasped, and despair often begins to visit.

My husband likens it to trying to take a deep breath for a while out of very narrow straw, with nose plugged and no gasping allowed as one tries to continue with the process for a very long while. Oxygen becomes low, dizziness visits the head and eyes, lips begin to turn blue, so not a good thing to experience or watch another attempt to get through.

No, it doesn't really make things all better for me to speak to another, it just offers a feeling of comfort when others know how the medical journey really is, not lumping these loved ones with other lung diseases which are not at all similar. So achieving personal contact is what this is really all about, painful as it is.

Please keep this little girl and her emotionally drained family in your prayers, who are also walking along the same medical journey as ourselves and our new friends in Seattle.

It's like the little girl's father said to me....
"Under no certain terms would I hide away because of privacy issues. Nope. I want to shout it all from the rooftops, get it around the world that WE NEED HELP HERE."

And with that, there were no words that could escape my mouth. Not one... because sometimes there in that gut wrenching place, the heart speaks without words.

...coming soon; "Embracing Jeremiah 29:11