Our two beautiful sons, Asher and Cohen, have an extremely rare inherited disease called NEMO Deficiency Syndrome.

You can learn more about NEMO here: https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/nemo-deficiency-syndrome/

They are very susceptible to infections, as we learned three years ago when Asher suddenly developed a severe bone and blood infection. Fortunately, we had a great medical team and got a quick diagnosis. Thanks to a preventative regimen of daily antibiotics and weekly immunoglobulin infusions, we have enjoyed a few years of "normalcy" and have avoided any further infections. We've done our best to protect them, but we know we cannot keep them in a bubble forever. It is not a matter of "if" they will encounter another infection but "when."

The only lasting solution is a bone marrow transplant to replace their faulty immune system. Obviously, bone marrow transplants are not without serious risks. We've met with multiple specialists, and they all agree that we should start planning to transplant in the next year or two, but only if we can find a near-perfect donor match. We recently completed the search for bone marrow donors and were disappointed to learn that neither child has a full donor match.

The ideal donor would be an HLA-matched sibling. We gave up on the idea of having more children a few years ago after discovering NEMO. We'd occasionally have the "If I just knew it would be a girl, then..." talk, but it seemed too risky. (NEMO is an X-linked disorder, so males are most affected, and females can be carriers of the disease, like myself.) However, I've recently learned that we could potentially conceive another child through IVF and genetic screening. It'll be "needle in a haystack" odds to find the golden embryo that does not have NEMO and matches the kids' HLA type, but we just might get that girl we've always wanted AND some life-saving cord blood to cure Asher and Cohen.

We have been assured that we have plenty of time and do not need to rush into making any transplant decisions. IVF is challenging and expensive, but we are in a position to try and hope for the best-case scenario. Thank you for supporting our family on this ambitious journey.