I’ve might have hit a major breakthrough on the genetic front!!!

I got a voice mail message from the woman who was married to John Clarke who died when he was 50 years old in 1987—I had sent an email and some of Noah’s medical records (because those are the ones I had in front of me) to someone else who contacted me through findagrave, who said she knew his widow —

Joanne Clarke didn’t say in her message that her children or grandchildren are experiencing similar issues, but, she left me a long message saying she definitely wanted to talk to me—I can’t imagine any other reason then there’s something going on with them too!!

If we can get DNA from her children or grandchildren (she’s not effected—she married him), then that would help narrow down the search **dramatically** — Maybe even down to 1 or 2% of my dna —

John Clarke is the son of Laura MacKay, who was my grandfather’s sister. My grandfather, Donald Alexander MacKay, died from this disorder (in the end it was colon cancer), so I’ve been posting all over findagrave and on 23 and Me and on Ancestry, everywhere I can that I’m trying to connect with relatives who might have this too!!!

John’s sister, Judy, also died fairly young and didn’t have children, but John had 3 kids in the early 1960s, and I know one of them had children as well.

Of course I hope none of them have this, but the fact she left me such a long message saying that she really wanted to talk with me is very encouraging!!!

If it turns out someone in her family does follow a similar pattern, low white cell blood counts, problems fighting infections, etc, I’m going to talk to the company whose doing our exome to see if we can get a kit out them as well.

I’ve had so many letdowns over the years I can’t get my hopes up, but the tone of her voice in the recording was one of being so happy to hear from me — like relief — it reminds me of when I first made contact withUncle Bobby, the Uncle I never knew, who was so relieved to hear from his niece with strange health problems that no one seems to understand…

I can’t believe how lucky this is!!! I can’t believe she called me and I found her. Praise the Internet!!! Such a beautiful thing. I’ve been so ill the last few months I barely have the energy to do much of anything, I don’t know how people like me every survived in life before Internet and cell phones—

This is really huge…one thing that my father, uncle, noah and I share in common is this unspoken bond, we know how much we suffer on the inside and we know how healthy we look on the outside, it’s like being trapped in a curse that only the other afflicted truly understand —

That was her tone…relief and excitement…she must have loved John Clarke very much (he died in 1987!), and he must have suffered a lot, because after all of this time she still cares deeply about what happened to him…

I can’t wait to talk with her…what a breakthrough this could be…we could all help each other too ❤️.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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