Too Close for comfort…

Cami and Mike,



These are the "provisional" results on your family, i.e., for the Morquio syndrome type A "carrier" status. ("Heterozygous" means

"carrier".) We will not issue the actual final report until we have sequenced the entire gene for each person, and exon 1 is still a problem that we are working on. 'Hope this helps, and that you are all well!



Warm regards,

Chet

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Michael Lane (Sr) is heterozygous for the mutation Q273X



Cami Lane is heterozygous for the mutation Y385X



Broc Lane is heterozygous for the mutation Y385X



Drake Lane is heterozygous for the mutation Y385X



Michael Trey Lane (Jr) is heterozygous for the mutations Q273X and Y385X





Too Close for comfort…



Through the tears I write this thinking of the “what if’s” that take over my every thought at this moment. Mike and I were playing a game of chance without ever knowing it. Seeing the results of the “carrier status” and knowing that Drake and Broc were so close to being affected…I fell so helpless and weak. My mind races back to all three of our miraculous pregnancies and the pure bliss they brought to our young, naive lives. Knowing what we know now, I thank God for the lack of knowledge. I thank God for allowing me to cherish three remarkable pregnancies, I thank God for the three beautiful babies Mike and I have created and can’t imagine the emptiness we would be living had we known what we know now. These are the three children God has chosen to be ours and how fortunate we areY !



In this instance, “Ignorance is Bliss” The fact that we had no idea this disorder was a part of our story was a blessing in disguise. For this is how “our story” was written and was not to be changed. How lucky we are that life was so easy at the time and that we were blessed with the three angels we were…had we known what we know now, I’m afraid to think how different life would be.




Seeing these results in black and white are chilling to me…all I can think is that I passed this gene on to all three of my babies. Of course I always prayed for the best and after a while even thought the outcome could be nothing but the best. So when the results hit you like a ton of bricks between the eyes, it hurts! My heart aches, my body is weak and my thoughts are numb. I wanted so badly for this not to have to be a part of Drake and Broc’s future too. One day as Grandparent’s-to-be, Mike and I will be sure to provide our son’s will all the facts they need…who knows, by the time they decide to conceive, maybe prenatal testing for the MPS disorders will be part of the prenatal protocol J



“With God behind us and His arms beneath us we can face whatever lies before us”

Responses that touched my ♥HEART♥

Hey there,
Another "comment" along with Melody and Gina's ??? Is this going to work?

Cami:

I just have to tell you how much I really admire your faith. Your family
has been dealt something that could easily have you be angry. I always want
to feel strong in my faith and convictions, but there are times that I
don't.

Who knows, maybe this is all part of the big plan. You are a catalyst to
show people that you can be strong and have faith thru adversity.

I just wanted you to know that there is something good coming from all this.
I am just sorry that it is at your family's expense.


-Brenda

Dear Cami,

You have been a rock, an advocate, a scientist, a researcher, a geneticist, a teacher, a doctor, a nurse, but most importantly a wonderful mom. God knew what He was doing. He gave you a special blessing. When you pray for strength, God does not give you strength, he gives you the opportunities to be strong, etc. I am in awe of you and all of your hard work. My heart goes out to you and your family. You are in my prayers.

Much Love to you and Yours,

Gina



Gina,

Again I am in tears…you made we feel so strong, made me aware of my inner strength because on the outside I feel so weak and frail. Thank you for lifting my spirits and keeping “the fight” within me, in me.

I love you my long time, dear friend!

Cami


Hi Cami:

I am so glad that you are everyday getting closer to all of your answers. While reading this I was remembering when we tried to have our babies and how I really never knew that there was only really one special day or time in a month that you ovulate allowing a pregnancy to even happen. In our early years we are so full of sweet treasures that later become our destiny's. I am sure not anyone would have ever thought to be tested for these things. This is truly what was supposed to be. Oddly that feeling must be some kind of comfort. We can't know everything and we aren't really in charge of our lives. We just do the best we can. You are still my "Hero". You take each day at a time and your are relentless in your quest. No one could do it or recall it better.



Thanks for sharing and you are always in my prayers..



XOXOXOOX, Melody

Again and again your words touch my heart, my soul…thank you for making me see what was meant to be in a new light

Hugs, Cami