So we have one last hurdle to get past before our first IVF cycle. When I say...well kinda, I mean that in the sense that in order for this to work there are a LOT of hurdles to jump. However, this is a major one.
So, everything is in place. The PGD place we're using's in the middle of building our test right now, and Adam and I have our "official" nurse appointment this Friday to start at the IVF clinic. We will go over everything, and start the schedule for our pre-testing, etc. However, there is one thing that could prevent us from doing this whole thing. I'll try and explain it the best I can. It has to do with the HLA typing.
HLA typing is what determines if you are a bone marrow match for someone. In 6-7% of the time, a child may not inherit a complete set of HLA information from a parent. This results in what they call a "recombinant HLA". If Macy is in this 6-7%, then there will basically be no way any embryos will be an HLA match for her. This is because children usually inherit the entire HLA complex from their parent. I will list some examples below to explain it a bit better.
For example: If my HLA type was: ABCD1234, and Adam's was: EFGH5678, our child could inherit an HLA type 1 of 4 ways as: ABCD (from me) and 5678 (from Adam), or 1234 (from me), and EFGH (from Adam), and so on. However, sometimes if the recombinant HLA is inherited for example, instead of inheriting say, ABCD from me, say she inherited AB34 instead. That is a recombinant HLA, and since it only happens in 6-7% of cases, there would be virtually no chance any of our embryos would be a match for her.
We had Adam's parents, and my parents send in DNA samples so as they are building our test, they will be able to tell by comparing our parent's HLA's with ours, and Macy's to know if she has a "normal" HLA or "recombinant" HLA. The alternative would be to go through the entire IVF cycle only to find there are no HLA matches, and never will be. And since IVF with PGD cost about same (per cycle) as our SUV when we bought it new; we don't want to take that chance.
Life pre-FA if someone told me there was only a 6-7% chance. I probably wouldn't have thought twice about it. Just assumed we are good to go. But when Macy already has a disease that you have about a 0.00028% chance of having in the first place; 6-7% is huge. So please pray that she inherited a normal HLA type.
Hopefully we will have good news in a few weeks!
Also, I wanted to take a moment and say a HUGE thank you to everyone that donated to the Fanconi Anemia Research Fund; whether in honor of Macy or anyone! I know there is still money being sent in, but so far as we know there has been almost $700.00 donated in honor of Macy and we are truly so thankful to have so many people that care about her. She is such a loved little girl, and we are touched by everyone's generosity.
In the last two weeks two little girls have lost their battle with FA and it breaks my heart. Their families are devastated as you could imagine, and our thoughts are prayers are with them during this horrible time.
We, as parents are more determined than ever to find a cure, and we couldn't do it without donations to fund research. thank you again.