Jeremiah Gracen TK2D Warrior

Jeremiah got up at 2:30am and didn’t go back to sleep until around 7:30pm. Tonight it’s more of an educational post/update because I will combine video tomorrow instead.

Jeremiah’s lab results are a little better, to me that’s good because it’s not worse. His labs are to look at numbers related to his disease progression and muscle breakdown. We still have to wait for one more that was mailed off. A few weeks ago they were concerning. Thankfully there is no need for any liver interventions. Now let’s get to his airway.

I don’t really stop him from squealing because I know that it’s a blessing. His airway is actually collapsed all around the circumference and his vocal cords are in a way that even though there is collapse, the position still enables them to come close enough to each other to vibrate a little when air passes through. That small vibration is what allows him to make some sound, even if it’s not clear or strong, but he definitely gets loud. A healthy airway stays open like a firm straw. Jeremiah’s can fold and narrow, like a soft one. Even with his trach, his natural airway still matters for airflow, sound, and everyday function.
This is what strength looks like in real life. Not just surviving… but pushing through what most never see.

Many ask me why he doesn’t have a speaking valve. A speaking valve works by sending air up through the vocal cords so sound can be made. In his case, the airway above the trach is too soft and can collapse, so pushing air upward could make breathing harder instead of easier. Because that space isn’t reliably open, a valve could cause air trapping or discomfort, which is why it may not be a good option for him right now. The collapse limits the space for him to breathe well and requires a lot more energy to do so.

So when you hear my baby making sounds cheer him on…because it takes alot of determination and strength. 🥹

If it’s in God’s plans one day, if Jer does get off the vent and doesn’t need a trach anymore, he would need an airway reconstruction depending on if it’s possible. They did not have to physically operate on him today but he did require anesthesia and to be in the OR so they could examine him internally. He has a lot of secretions so we hope to get that to a safe place before discharge.

Thank you for the love, support and prayer. Summarizing everything above….it all works together for his good, because even in the substantial collapse, he can still make sounds.

Today we pray that despite what things may look like, you know that all things work together for good is a promise that God uses every circumstance including struggles and pain for the ultimate spiritual good of those who love Him and are called according to His purpose. May we find gratitude in being able to make sounds, and ensure that we use it for His glory. May we never forget that God is good yesterday, today, tomorrow and forevermore.
💚🙏 Happy Wednesday 💚🙏
Posted April 29th 2026 at 8:59pm

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2 months ago | [YT] | 41

Jeremiah Gracen TK2D Warrior

This year my pastor has been teaching on the peace of God, and that it’s within. I didn’t really sleep last night and today was super long so there is no video.

It’s been 497 days that we have not had to stay at the hospital and I’m really proud of that. In the past it often felt like we lived here for extended stays and back to back admissions. Last night my mind was all over because sometimes all of the past trauma from being a medical parent resurfaces and it can be heavy. I almost took my anxiety and depression medicine but decided not to. I packed, prayed, worshipped and babyyyy I drank coffee.

But, I am thankful for my faith. This scripture helps - Philippians 4:8 (KJV) encourages focusing the mind on positive, virtuous, and godly thoughts: "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things".

So my focus shifted from trauma to more of a celebratory reunion. So I greeted everyone at the Pediatric Intensive Care Unit with “Hey, I haven’t seen you in so long” which is a good thing in our world. We focused on how much he has grown as he is now over 46 pounds and that he is doing well.

Tomorrow he is scheduled to be in the OR at 9am so whisper a prayer that his labwork comes back better, his airway is less collapsed and functionally better and that his liver is good. Short, specific and strong.


Today we pray that you study the word and keep positive things within so that when life happens you can shift your perspective to one of gratitude knowing that peace is already within. May you speak those things as though they were holding faith in God’s promises despite contrary physical evidence. May we never forget that God is good yesterday, today, tomorrow and forevermore.

💚🙏 Happy Tuesday 💚🙏

2 months ago | [YT] | 42

Jeremiah Gracen TK2D Warrior

Words cannot describe my emotions for the last few hours. I’ll have to edit and upload his video tomorrow as well as a special one about the journey thus far.

I’ve been in interviews and phone calls, while also taking time to send a few thank you messages.

This historical victory is not just a win for us, it is a win for the entire mitochondrial disease community and for rare diseases as a whole. It is also a win for those who may feel hopeless. All I could do was cry, I cried for his diagnosis when I was told there was no treatment or cure. I cried when they said he had three months to live and they would give him comfort meds.

But God.

Jeremiah was blessed to be a part of historic research. He has been taking the medication for a few years which slowed down his disease progression. Instead of getting weaker over time, I’ve publicly shared his journey where he has gotten stronger. We have been involved in so much behind the scenes from corporate meetings, to FDA sessions, Capitol Hill advocacy days and so much more. Just to be a part of something so great is truly humbling. So today I cry, and I cry, not just because the FDA has approved the first ever treatment for TK2D (so now others can get the meds Jer is on), but I cry for those lives lost who paved the way, for those who are holding on to hope, and to those still searching for a diagnosis. So I’ll end the day as we have done every other day, doing what I know best to do…pray.

God, today we pray that you remind us to be content in our circumstances and find provision in Your Word. May we use our testimonies to encourage others along the way and advocate to be a voice of change. God thank you for your faithfulness even when we may doubt it. Thank you for showing us that hope shines brighter than anything we may face. Thank you for gratitude in grief and for abiding within us. Thank you for being the source and providing all of the resources along our journey. Thank You for guiding us to turn pressure into prayer and praise. Thank you God for being you. May we never forget that God is good yesterday, today, tomorrow and forevermore. 💚🙏 Happy Monday 💚🙏 Posted November 2nd 2025 at 8:43pm

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8 months ago | [YT] | 60

Jeremiah Gracen TK2D Warrior

Just a few pictures from the last 24hours with two of my favorite people. No video today, it will be combined with tomorrow’s as we didn’t record much today as I’m resetting. But….of course we pray.

Today we pray that you allow yourself to reset as many times as you need knowing God gives new grace and mercy daily. No matter what the day or night may hold, always remember to just pause and pray. May we never forget that God is good yesterday, today, tomorrow and forevermore.
💚🙏 Happy Saturday💚🙏
Posted November 1st 2025 at 8:00pm

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8 months ago | [YT] | 32

Jeremiah Gracen TK2D Warrior

Concerned but not consumed, the powerful sermon at church yesterday. Just reflecting on how much as a church body we worshipped yesterday and knowing God’s grace and mercy was sufficient for today. Life happens but God is still faithful.

As we headed to therapy today, while at the red light, a GMC truck failed to stop and slammed into the back of us. The contents of the van dispersed in the front and the glass shattered upon impact.

Yet, I am thankful that even though I am terribly sore, Jeremiah’s wheelchair safely secured, cushioned his impact versus his car seat. No glass got to him as I happened to put him on a bucket hat today. His arm was stuck in his wheelchair side, but he was cleared of any damage.

No video today, I’ll add it tomorrow. Nurse T will work tonight and once I get myself together, I’ll figure things out.

Today we pray that you understand life will happen, be concerned but don’t let it consume you. May we rest assured covered in God’s grace and mercy, and find peace in His faithfulness. When things may seem to be a wreck, God already has a plan. May we never forget that God is good yesterday, today, tomorrow and forevermore. 💚🙏 Happy Monday💚🙏 Posted September 29th 2025 at 7:43pm

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9 months ago | [YT] | 23

Jeremiah Gracen TK2D Warrior

The ending of 2023 we missed church then he was admitted January 1st with the flu. This year started in the hospital but I’m thankful it ended in the sanctuary. This past year has simply been alot of gratitude in grief. We had a very long night, I haven’t rested, so no video as it will be combined tomorrow. Thanks be to God for all the works He has done this year! We have mobility, better communication, a start at eating, strength, lots of noises and a budding personality. We haven’t conquered the toothbrush chronicles, we have had set backs and tears, but we are still here. God’s plan, God’s timing…

Today we pray that you pause to reflect regardless of the tougher times and find gratitude in grief. For every setback, tougher moment or those filled with tears, hold steadfast to the fact that God never stops working and He never changes. May we never forget that God is good yesterday, today, tomorrow and forevermore.

All the best for 2025
💚🙏 Happy Tuesday💚🙏

Posted December 31st 2024 at 8:27pm

1 year ago | [YT] | 51

Jeremiah Gracen TK2D Warrior

There once was a boy who got a death diagnosis of a rare mitochondrial disease called TK2D. But thanks be to God the author of life, for allowing us to share his journey. Tune in this week as we celebrate TK2D Tuesday and continue global advocacy. #livingwithtk2d #mitochondrialdisease #rarediseaseawareness #TK2dTuesday #findthecure #rarebutworththeshare #ButGod

2 years ago | [YT] | 62

Jeremiah Gracen TK2D Warrior

Things that keep me going- HOPE for the cure 💚, not just for Jer Bear, but for all those affected by mitochondrial diseases.
🗣️ Education
🗣️ Awareness
🗣️ Support
🗣️ Inclusion

TK2D may be #rarebutworththeshare
My handsome, intelligent, expressive toddler deserves to live….If they can put money into everything else in the world, why not put it towards funding and finding a cure….

You can learn more or support research at

www.umdf.org/jeremiahgracen

3 years ago | [YT] | 44

Jeremiah Gracen TK2D Warrior

3 years ago | [YT] | 45