Tuesday, September 15, 2009

Baby Tito and his NF1

Dear Friends and Family,

Our son is now 5 1/2 months old. We cannot describe what a joy he is in our lives. Who ever knew that a child could be such a life-changing blessing? The toughest thing is looking at him and knowing that he has Neurofibromatosis type 1 (NF 1). What does this mean?

NF 1 is a congenital disorder
. Some 1 in 3,000 babies are born with it. It is a peculiar condition. No one can predict how NF 1 will play out in a person's life. It just happens to be the case that our baby has developed some of the features of NF 1 very early, starting with cafe-au-lait spots on his skin when he was 7 weeks old. These spots spread to his right eye by the time he was two months old. The good news is that Tito can see.

The concerning part is that the baby has developed a complex set of rare problems in his brain, all related to his NF. These include:

-a cyst
-a plexiform neurofibroma mass
-sphenoid dysplasia (sphenoid bone deformation at the left temple)
-thickening of the dura (the lining between the brain and skull)
-bulging left eye

Here is the latest. On Wednesday, September 16, the baby will have a CT scan. This study, along with the MRI back on August 7th, will help the group of doctors in Seattle determine a course of treatment. Depending on the results of the CT scan tomorrow, we may be heading to Seattle Children's Hospital by this Wednesday or Thursday. If the baby's manifestations require no immediate attention, then we are scheduled with a group of doctors on September 30th in Seattle. I think the immediate goal is to try to save the left protruding eye.

We are hopeful that help can finally reach our son after being caught up in the Spokane medical system where no help can be given to the baby and where the baby's doctors have not collaborated. (Baby Tito has seen 7 doctors since his birth).

Thanks to you all for your caring thoughts, notes, and prayers. You make all the difference as we face challenging moments.


Nurvic family said...

You most definitely are in my prayers and thoughts. Please know that we will be here to help in any way possible as you travel this road. God Bless.

DCpiehl said...

Your website is well done. This little guy certainly has caring, concerned parents who love him very much. May God's presence provide you with comfort and strength to get through this trying time. Please let us know what we can do to help you. I wonder what you discovered today at the cat scan. It was too late when I finally got home from work to call you. Praying for you.

Penny said...

We are praying for all of you. I have stop asking why this happens to people, I hope this keeps your family close, During all this we all will grow close and We are here for you guys if you need us, anytime just contact us.. God bless you all.
"God watch over this family in there time of need, give the doctors what ever they need to treat Baby Tito and remove this growth in his brain without any damage, Hold Tito and Lace in your loving arms during all this. God you are a powerful man, show us another one of your miracles with Baby Tito, heal him, most of all love him and keep him safe, in Jesus name amen."

All our love to you guys during this time.
Jeff and Penny

Kierra said...

Greetings, I would like to send a donation to your family. How can I go about doing this?

Lace Marie Williams-Tinajero, Ph.D. said...

Thank you for asking. We appreciate your kindness yet do not expect money from people. For those who do give, we are keeping everything above board with all financial contributions so that they go only toward the baby's medical expenses. Our church family will be setting up an account for our son so the contributions can be tax deductible and monitored. We still need to set this up through our church at Holy Trinity Lutheran Church in Spokane Valley, WA. Please email further requests to lwilltina@gmail.com

Anonymous said...

Thank you for your thoughts and prayers.

Kim said...

To my Cousin and her lovely family.
My heart has never left all of you.
We have had our church constantly in prayer. They often ask me for updates and I will update them again!
I cannot tell you how hard all of this trial is, but I do know a little about trials personally. Jacob, my son as you know, was diagnosed at the age of 10 mos old with lukemia. We were sent to Children's Hospital in Seattle back in 1982. Jacob went through being sent back another time again later, but for some reason God decided to heal him. I have always questioned this, why my son and not my girlfriends son who died? Some go through the fire and some are given the strength for God's Glory to shine upon them for His-Story.. or history! I personally should not be alive, but God has saved me and healed me through surgeons hands over and over. Baby Tito is not the little NF1 baby to me.. just like I'm not Kim the Diabetic to you, right? Hopefully we are learning that life is very precious each moment and that's all any of us are given. You enjoy life better hanging loose rather than holding tight! May the Peace of our Lord Jesus Christ be with you.. as He is with us..Mark and I love you all. Mom is sending a belated birthday gift with them soon!
Love you.. Kimmy!