Cure 4 Jackson

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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

Dear Jackson,

It‘s Dada. I am writing this to tell you how much I love you. You are only 4 years old right now, so you can’t read this yet, but I know you’ll understand how I feel. I see an incredible love and understanding in you every day.

I want you to know you are my everything. You make me laugh and cry, you put a smile on my face when nothing else can, and you make me believe. I believe in you.

I wish I could take this all away from you. Take your burden from you, to carry it myself. To make your immune system whole. If there was a way to do that, I would have done it long ago. Your mother and I would do anything to ensure your health and safety. And so we are doing everything that can be done. We are trying to make a miracle. A miracle that will be both your sister and your savior.

I want to make you this promise. We will get through this together. Life has been extraordinarily tough for you, and we still face some very dark days ahead. But, together we can always find the light. I promise you this, son: I will never stop fighting for you. I will never stop trying to help you. I will never stop loving you.

Love,

Dada

I got quite a present for my birthday yesterday. You can see our new family member in the pictures. No..it's not what you think. This one has four legs and is furry. Jackson and Ally got a dog yesterday. Her name is Skippy (Jackson named her), and she is a Jack Russell Terrier. She's about 2 1/2 months old. As you can see, Jackson and Ally are in love with her (OK, Steve and like her too). She already loves the kids, she chases them and just loves for them to hold her.

As most of you know, Jackson loves dogs. He has quite a collection of stuffed and electronic dogs. We decided that he needed to have a real one. We were going to wait until after his bone marrow transplant. However, no one knows what the future will bring, so we decided not to wait.

If you know about Jack Russell Terriers, they can be a bit hyper. My friend, Sandra has one (Hi Einstein!), and he's crazy. So, I can't say that I didn't know what I would be getting. When we saw her yesterday, she was sleeping on a pillow. She slept all the way home. So, I was thinking, maybe she won't be so hyper. The minute we got home, she did about 100 circles around the living room, stopping only to jump straight up in the air. I think that she was just pretending to sleep. Jackson and Ally loved it, of course, and chased her while she ran.

What were we thinking!

We found out today that our 5th IVF cycle wasn't successful. The pregnancy test was negative. We are trying to stay positive and focus on the next cycle. We'll try again, probably in April. We have no choice. Jackson needs us.

Thanks to everyone for your thoughts and prayers. Please keep us on your prayer lists. Our fight isn't over.