Praying For John

11/12/2025

❤️

11/11/2025

Infusion Day!

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11/11/2025

Genetics appointment for our John this morning! Everything went well, and John is in a good place right now. We are still waiting for him to catch up on a few of his milestones, but he has had a couple of illnesses recently, and it can take quite a long time to catch back up after being sick, so we're going to try not to worry right now, but instead just focus on our different therapies and making slow but steady progress.

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11/11/2025

Happy Tuesday, friends! Welcome to week 5 of $2 Tuesday!!!

Week 1 raised: $387!
Week 2 raised: $124.59!
Week 3 raised: $396!
Week 4 raised: $410.50!

Let's do this! 💛

_________________________

Happy Tuesday, friends 💛

In an effort to provide funds for John's needs not covered by insurance....... We're rolling out $2 TUESDAYS ‼️‼️‼️

What's this?

Each Tuesday, you have the option to wake up, have your coffee, and donate $2 to the "Make Treatment Accessible for John" fund.... meaning every dollar donated on Tuesdays will go into a fund mainly designated to cover travel costs and the significant cost of specialist appointments out of state twice a year!!!

This is a great and financially efficient way to raise money to support John's needs and our family! Our goal is to raise 6K so that we can travel to DC, NYC, and Rutgers Med in early December! We understand this is a big goal, but John needs to see his doctors, and there are over 4,700 friends following John's page. If everyone donated $2 just today, we could well exceed this goal in just the first week! 🙌🏻

EVERY DOLLAR COUNTS! 💛

We really need our community for this 🫶🏻❤️

A few options to donate:

💛 PayPal:
💛 Venmo: Johns_Journey
💛 CashApp: $JohnsGaucherJourney

We will include our GFM link, but please remember that GFM does take a cut out of every donation, and EVERY DOLLAR COUNTS 💛

Https://gofund.me/ec844d77

Please share share share!

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🦓❤️

11/10/2025

ENT appointment today!

John will be having another surgery sometime around mid January to both deep clean his ear canals, and place new ear tubes. He will also be getting a hearing test in the OR while already sedated.

Our ENT is ordering a PICU room for recovery, but the hope is always for John to recover the same day and not need to stay the night.

John was SUCH a good baby to let his doctor look in his ears, even though that is his least favorite thing for his doctors to do, so Mark picked him out a Thomas the Train sticker as a reward! 🥰

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11/10/2025

PT this morning wore us out!

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11/06/2025

‼️ Week 4 of $2 Tuesday raised: $410.50!

For a total of.... $1,323.09 of our 6K goal raised for our next medical trip on the east coast, and John's medical needs out of the country!

Someone we were connected with was able to get 3 boxes of John's ambroxol through customs!

Thank you everyone! 🥰

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11/05/2025

Thank you all for praying for a solution to our heater!
Integrity Heating and Air LLC was able to diagnose the problem and fix it within a couple of hours today! Marilyn and Cordell are the sweetest people (and Christians! 🥰), and we are so thankful for their willingness to help and make this repair very affordable for us! If you are local to KC, please consider them!

11/05/2025

John had a nice long visit this morning with his PT, and his representative from Alliance Rehab! He practiced his sitting up, gave lots of smiles and chatting, and got to be fitted for his new wheelchair! Our pediatrician has already submitted the script for this adaptable stroller/wheelchair, so now our PT has to submit a letter of medical necessity, and we wait to hear from insurance! We are so excited! 🥰💪🏻

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11/05/2025

Newborn screening for Gaucher Disease would have meant starting treatment 6 months sooner for John, but it is not on the newborn screen in Kansas. Thankful for the work the Gaucher community is doing to get Gaucher added to the newborn screening panel in every state!

11/05/2025

Extending $2 Tuesday through 11:59 tonight since we got such a late start on it yesterday! 🦓💪🏻

Happy Tuesday, friends! Welcome to week 4 of $2 Tuesday!!!

Week 1 raised: $387!
Week 2 raised: $124.59!
Week 3 raised: $396!

Our goal is 6K for an upcoming medical trip consisting of 4 specialists in 3 states on the east coast. This will include the cost of 2 week's worth of John's enzyme medication (Vpriv) to take with us and will be infused in Virginia. (The total cost of this medication is $6500 for both weeks. Almost $5000 can be covered with John's remaining funds from a rare disease organization, and the remaining $1600 we will have to cover out of pocket.) The fee for John's neurology consult in NYC will be $600 out of pocket, excluding any testing they may want done while there. (I am hoping to defer any tests until we get back to Kansas, so that insurance will pay for it.) The out of pocket fee for John to see his Immunologist in DC will be $230. This 6K goal also covers bills that will have to be paid while we are gone, as well as all travel costs of course (gas, hotel, food etc).

Let's do this! 💛

This picture is from yesterday driving back home from Oklahoma where we were visiting family. John was very happy to get some change of scenery! 🥰

I will be extending today's $2 Tuesday until midnight tomorrow since I got such a late start on it today!

_________________________

Happy Tuesday, friends 💛

In an effort to provide funds for John's needs not covered by insurance....... We're rolling out $2 TUESDAYS ‼️‼️‼️

What's this?

Each Tuesday, you have the option to wake up, have your coffee, and donate $2 to the "Make Treatment Accessible for John" fund.... meaning every dollar donated on Tuesdays will go into a fund mainly designated to cover travel costs and the significant cost of specialist appointments out of state twice a year!!!

This is a great and financially efficient way to raise money to support John's needs and our family! Our goal is to raise 6K in 6 weeks so that we can travel to DC, NYC, and Rutgers Med in early December! We understand this is a big goal, but John needs to see his doctors, and there are over 4,700 friends following John's page. If everyone donated $2 just today, we could well exceed this goal in just the first week! 🙌🏻

EVERY DOLLAR COUNTS! 💛

We really need our community for this 🫶🏻❤️

A few options to donate:

💛 PayPal:
💛 Venmo: Johns_Journey
💛 CashApp: $JohnsGaucherJourney

We will include our GFM link, but please remember that GFM does take a cut out of every donation, and EVERY DOLLAR COUNTS 💛

Https://gofund.me/ec844d77

Please share share share!

🦓🧬
💙
🙏
💪🏻
🦓❤️

11/04/2025

Happy Tuesday, friends! Welcome to week 4 of $2 Tuesday!!!

Week 1 raised: $387!
Week 2 raised: $124.59!
Week 3 raised: $396!

Our goal is 6K for an upcoming medical trip consisting of 4 specialists in 3 states on the east coast. This will include the cost of 2 week's worth of John's enzyme medication (Vpriv) to take with us and will be infused in Virginia. (The total cost of this medication is $6500 for both weeks. Almost $5000 can be covered with John's remaining funds from a rare disease organization, and the remaining $1600 we will have to cover out of pocket.) The fee for John's neurology consult in NYC will be $600 out of pocket, excluding any testing they may want done while there. (I am hoping to defer any tests until we get back to Kansas, so that insurance will pay for it.) The out of pocket fee for John to see his Immunologist in DC will be $230. This 6K goal also covers bills that will have to be paid while we are gone, as well as all travel costs of course (gas, hotel, food etc).

Let's do this! 💛

This picture is from yesterday driving back home from Oklahoma where we were visiting family. John was very happy to get some change of scenery! 🥰

I will be extending today's $2 Tuesday until midnight tomorrow since I got such a late start on it today!

_________________________

Happy Tuesday, friends 💛

In an effort to provide funds for John's needs not covered by insurance....... We're rolling out $2 TUESDAYS ‼️‼️‼️

What's this?

Each Tuesday, you have the option to wake up, have your coffee, and donate $2 to the "Make Treatment Accessible for John" fund.... meaning every dollar donated on Tuesdays will go into a fund mainly designated to cover travel costs and the significant cost of specialist appointments out of state twice a year!!!

This is a great and financially efficient way to raise money to support John's needs and our family! Our goal is to raise 6K in 6 weeks so that we can travel to DC, NYC, and Rutgers Med in early December! We understand this is a big goal, but John needs to see his doctors, and there are over 4,700 friends following John's page. If everyone donated $2 just today, we could well exceed this goal in just the first week! 🙌🏻

EVERY DOLLAR COUNTS! 💛

We really need our community for this 🫶🏻❤️

A few options to donate:

💛 PayPal:
💛 Venmo: Johns_Journey
💛 CashApp: $JohnsGaucherJourney

We will include our GFM link, but please remember that GFM does take a cut out of every donation, and EVERY DOLLAR COUNTS 💛

Https://gofund.me/ec844d77

Please share share share!

🦓🧬
💙
🙏
💪🏻
🦓❤️