Tanner's Journey

Update 11/18/2023:

I apologize for such a late update. We made it home from Mayo. That was the longest drive. 23.5 to get there. Coming home, I broke the trip up and slept. We received answers. Nothing could have prepared me for the diagnosis. Tanner’s decline started in March. 3 long hospital stays between March - May. I had researched just about everything the doctors had told us it could be. This was never something mentioned. When our genetic report finally came back, we were told to reach out to the researchers who were working on this gene. Tanner’s gene is STT3A-CDG. Less than 20 people in the entire world have this gene. The few that I have connected with also have 1 child with this gene. They are in other countries and medical care seems a lot different in those countries. Tanner and I will make another trip to Mayo to trial medication to help with his pain. Tanner started several new trial medications. The first one was started almost 60 days ago to help strengthen his muscles. The medication is given every 4 hours, and we have seen some improvement in his strength. We have noticed that he can stand a few seconds longer when we are dressing him and Aquatics PT has noticed it in some activities that they do. We started the second one 3.5 weeks ago. We have seen no change with this new medication. Because of Tanner’s stroke-like episodes and his left arm presenting like his legs originally did, he will move to a motorized wheelchair. This has been a long process. His wheelchair is designed specifically for his body. They build these wheelchairs based on the measurements of the patient. His wheelchair will be delivered at the end of December. His wheelchair will require a ramp to get into the house and a ramp to get into the vehicle.

Tanner’s back muscles have weakened significantly and cannot sit without some type of back support. We have several things in the works for this. We received a prescription order for a “stander”. This is a large machine that we will strap him into and it will allow his body to build up stamina. The other two things are custom orthotics.

I have watched Tanner rapidly decline over the last 8 months. It is the most gut wrenching feeling I’ve ever felt. It is the hardest thing to watch your child struggle to do things he could do 8 months ago. I feel helpless and I hate it. Tanner’s muscles are becoming atrophied. We are trying to prevent contractures from forming. We have Physical Therapy & Aquatics Therapy multiple times a week at TIRR. We hope he will soon meet the requirements to go inpatient at TIRR. This will require his body to complete 3 hours a day of PT.

Our Dr gave us a packet on our next steps in our CDG journey. It is something that I read daily. “Love for your child will carry you through even on the hardest days. Your life may no longer be the same, but the feelings of gratitude for this special child will outweigh the feelings of stress on tough days ahead. The tears of confusion and sadness will eventually change to tears of joy.”

Thank you all so much for praying and loving my sweet boy.

- Melanie

Update 8/24/2023:

After the initial shock from the news we received Tuesday regarding the unexpected out of pocket costs we now had to come up with before Tanner could be seen Friday morning, I was convinced there was no way we’d be able to make the trip happen (after receiving prior authorization for Mayo Clinic to be in network and bending over every which way to make this happen SO quickly). I went to bed with the intention to get up a few hours later and try to somehow find thousands of dollars.

I never actually made it to sleep. My phone kept going off and when I realized why, the tears started and wouldn’t stop. Old friends, classmates, former coworkers and bosses, complete strangers…YOU are the reason. YOU are the reason I loaded us up and headed North in the middle of the night. YOU are the reason we are now less than 200 miles from The Mayo Clinic. YOU are the reason I still believe there is some good left in this world.

I don’t have adequate words to thank you all for what you have done for our Tanner and our family. Despite all the darkness, the last 24 hours have shown us the light will always shine brighter. This is just the beginning of a long journey for us, but we wouldn’t have been able to begin without y’alls generosity.

I will update sometime after we complete all of our appointments tomorrow.

As many of you have seen in person and through Facebook, our son Tanner has been enduring a difficult journey that has left him wheelchair dependent, as well as dependent on his mother and I for basic needs such as bathing and teeth brushing.

In a matter of 6 short months he has deteriorated to this condition from being an energetic, climbing, running, bike riding and fun loving child.

We don’t have answers from anyone in the Houston area medical community and at the advice of his doctor, have decided to go to Mayo Clinic for further evaluation and praying for resolve and recovery.

He will be making multiple trips back and forth as needed. My wife has worked tirelessly and without sleep to get everything together and ready for this journey.

Friends, family, colleagues and acquaintances; we will need help, financially. I have swallowed my pride and am asking as missing work results in decreased pay, Melanie and I must be able to provide this opportunity for Tanner.

Any help will go to ground and air transportation, lodging, food and miscellaneous costs associated with this venture.

Anything and everything will help and be appreciated beyond words. Thank you for at least reading to this point.

From: Melanie (Tanner’s Mom)

If you have a child with complex medical issues then you know the struggle. I’m going to be completely transparent here - Tanner started struggling in February. 3 hospital stays, labs, meds, biopsies, scans etc. May we hit our max out of pocket - $11K. That amount doesn’t include the out of network costs/second opinions/modifications to simplify life for him/bath chair etc. July 1 our deductible and everything starts over. July 14th they told us he needed a custom wheelchair. Had they told us he needed it June 29th it would have been covered at 100% But sometimes that's the way life works. Each session of Aquatics/Land Therapy at TIRR costs our insurance a little over 1K - then we pay 20%. If you've ever known anyone that needed to go to Mayo Clinic - then you know it's 6M + wait (unless they see it as urgent) Kevin reached out to Mayo Clinic at the end of July. We received insurance approval (I think) the 2nd week in August. Last Friday evening I received an email asking if we could have Tanner to Mayo Clinic the following Friday. What parent would say no to that? I immediately started planning. Yesterday we received the estimate of costs. $3,311.00 to be paid before our first appt. I literally wanted to throw up. As much as I wanted to throw in the towel and say forget it. I couldn't. I'm Tanner's advocate. I'm

his mom. When you watch your child rapidly decline, I promise you will do whatever it takes to try to improve their quality of life. He doesn't currently qualify for any current research studies (yet) - He has to have more testing done before we can explore that possibility. Tanner & I will arrive in Minnesota tomorrow. We will make several trips over the next couple of months. Thankfully planned and not last minute ♥️