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Jacob’s Story

Jacob's journey continues to be an amazing one. Thank you for being a part of it....your love and support are such a blessing to us!

I'm almost 16 years old. I was born with Spina Bifida. It may be a common birth defect, but due to other complications, my condition is rare. I need a vent to breath and a wheelchair to get around. When I was born, some of my doctors told my parents that I wouldn't live to my first birthday.

There is a lot more to me than just a medical diagnosis!
I have a big brother named Caleb, my little sisters are Hannah & Rebekah and my baby brother is Zeke. I will be a sophomore next year and have awesome friends! When I am in too much pain to go to school, I use my computer to skype w/ my class. I love going to youth group at my church. My favorite things to do are playing Wii, listening to music, and watching the Food Network. I love to cook! Giada is my favorite chef.

Recent Problems
I started having lots of pain in the summer of '09. The doctors say that my brain stem is tethered to scar tissue from an old surgery. It makes me have really bad nerve pain and neck muscle spasms. It also causes "black spells". I take lots of pain medicine that helps control this.

Giving Back
I love helping kids in my community. I help The Children's Miracle Network and Tucson Medical Center by speaking at events to help raise money and awareness for other children who are sick like me.

I am so loved!
I may have a lot of hard things in my life, but I have a lot of happy things too. My mom and dad love me to the moon and back! I have siblings, grandparents, aunts, uncles, cousins, and a host of friends who include me, pray for me and love me. My mom says that there are people praying for me who have never even met me...that's pretty awesome!

My faith
I love God with all of my heart....I made a commitment to follow Him and was baptized when I was a little boy. I know that He has a plan for my life. I know that He has prepared a place for me in heaven. My favorite thing about heaven is that I will be able to run. I want to have a race with Jesus. 

Latest Journal Update

New Medical mysteries for Jake

Sweet family and friends,

It's been almost a year since I have posted anything on caringbridge. I tend to use it when we are facing issues that require some details and prayer, and that is no different today.

For the past few weeks Jacob has been experiencing some strange new symptoms. At first, it might sound exciting that he has had some feeling in his legs (which he never has before) and that he was even moving his right leg, but in actuality it is a sign that there are some neurological changes to be concerned about. The "feeling" has turned to pain in his legs and now he's having complaints of chest pain as well. We saw his neurologist last week. He confirmed that he's showing some weakness in his arms as well. He gently reminded me that this is a progression and should be expected. It's nothing we haven't heard in the past, but it was harder to hear this time because he really doesn't feel like there is anything more we can do for treatment other than make him more comfortable in dealing with the pain. He increased one of his meds and also started him on a medication that is helping him to stay more awake during the day. Between his brain stem being stretched and squished and the large number of medications he's on, he has a difficult time staying awake sometimes, as his teachers can attest to! :)

Monday we saw the pulmonologist. She gave some good insight and encouraged us to consider some other reasons for the pain that are just typical issues related to Jacob's diagnosis. It gave my heart some encouragement to have something "to do" or at least something to look to besides "the end". So, we are following her recommendations to see the urologist again and see if he's developing kidney stones again, the cardiologist to just do a check up on his heart, and then to the neurosurgeon at Phx Children's. I spoke at length with his nurse yesterday and they are ordering a full (head to tailbone) MRI under anesthesia as soon as they can arrange it here it Tucson, then we will head up to go over the findings in Phoenix.

In the meantime, Jacob continues to have the heart of a warrior. He's much more concerned about the needs and pains of others than he is of his own. He is grieving the loss of a classmate this past week. It has really affected him, but it has not caused fear as I worried it might. He just continues to talk about heaven and how amazing it will be when he gets there.

Our family continues to be super busy. The months ahead were jam packed with big events even before we started this new quest for medical answers. Hannah will graduate from 8th grade, and Caleb from high school! We would love your prayers as we balance all of it! 2 kids playing sports, upcoming class trips, and I went back to work a couple of months ago! I'm loving my new position as a Director of Children's Ministries at University City Church. My working again is a big transition for the whole family in many ways but especially because we moved church homes. We miss our sweet family (that will always be family) at Sabino Road. God continues to show us that He has a plan for our family and we are just clinging to Him as we follow Him on this ride!

I will give updates when we learn anything new or if anything changes. Thank you so much for being a part of our journey, for loving our family and for loving our sweet Jacob. We feel your love, we are confidant of the goodness of God despite difficult circumstances and it give us great strength for the journey before us.

"Be strong and courageous, do not fear or be in dread of them, for it the Lord your God who goes with you. He will not leave you or forsake you." Deuteronomy 31:6


Stacie, along with Jeff, Caleb, Jacob, Hannah, Rebekah, and Zeke
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1 Comment

Vanessa Buck
By Vanessa Buck
Thanks for sharing this update. Love the Mockbees! Will be praying for all of you as well as wisdom for the doctors involved. xoxox