Cure 4 Jackson

This is my 1st blog entry on cure4jackson. Our website is called cure4jackson. Here is a little background on why we need a cure for Jackson.

In 2002, when he was 4 months old, Jackson developed very mild, flu-like symptoms. Within days, he was in intensive care, on a ventilator and other life support, fighting for his life. He had sepsis, a bacterial infection in his blood stream and pneumonia. For 3 weeks, the doctors at Texas Children's Hospital in Houston were unable to tell us if he would survive. We found out within weeks, that Jackson had a primary immune deficiency. It would be months before we are able to diagose his problem. Luckily, Jackson was strong enough to pull through thanks to the amazing team at TCH and to the prayers of our friends and family. Unfortunately, our struggle isn't over.

Jackson spent more than 6 months of his 1st year of life in the hospital. Since then, his hospital stays have been short, but still too frequent. Jackson has been diagnosed with a ectodermal dysplasia with a primary immune deficiency, caused by a mutation on the NEMO gene. It took several months for our doctors to make this diagnosis. This is an extremely rare genetic condition (about 14 people in the world with this condition) that causes frequent, life-threatening infections. We've been lucky. A lot of kids have it worse that Jackson. However, we know that Jackson's only chance for survival is a bone marrow transplant.

Our doctors told us that we need to aim for a bone marrow transplant around age 5 for Jackson. He will be 5 in October, so it is critical that we try to find a match quickly. Unfortunately, of the millions of registered donors in the international bone marrow registry, none are a match for Jackson. Therefore, we had to take things into our own hands. We are currently undergoing invitro fertilization and pre-implantation genetic diagnosis to have a child that will be a bone marrow match for Jackson.

We had an embryo transfer on Friday, 2/16. This is our 5th try at IVF, so we need a lot of positive thoughts and prayers that this transfer results in a successful pregnancy. We will go on 2/27 for a blood test to see if the transfer has resulted in a pregnancy.

We ordered silicon wristbands for Jackson today. They are green, in honor of Ally, his 1 year old sister. Green is Ally's favorite color, and she'll tell you this very loudly. I can't tell you how many times I've heard the phrase "I want the Green one, the green one!". When you ask Jackson, "What does Ally say?", he'll tell you, "The green one!!! The green one!!" So, we ordered "the green ones". We will sell them for $5 each and use the money to help with the cost of treatment for Jackson. The IVF cycles are very expensive (about $20,000 per cycle) and we anticipate that the bone marrow transplant will be at least $15,000 after insurance.

I want to thank all of our friends and family for their support over the past few years. I want to especially thank Andres Trevino for putting this site together and for the inspiration that your family has given us. The Trevino's have a son, Andy, who also had a primary immune deficiency and ED caused my a NEMO mutation. Andy underwent a bone marrow transplant and is doing well (that's why I say had). Their daughter, Sophia, was born the same week as Ally, our daughter, and was a result of IVF and PGD. I feel as though we are walking in their footsteps. Their website is www.andy.org.mx