John's Journey

John's Journey John was born with an extremely rare neurogenetic disease, Type 2 Gaucher's Disease. John and his family need your prayers and support.
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PT for John this morning! 💪🏻
06/15/2026

PT for John this morning! 💪🏻





Enjoy some of the first John smiles in months. 💛 Such a happy infusion day! So thankful for a morning of relief. 8 days ...
06/09/2026

Enjoy some of the first John smiles in months. 💛 Such a happy infusion day! So thankful for a morning of relief.

8 days until we leave for DC ‼️

$2 Tuesday.... on time this week!

PayPal:
Venmo:
CashApp: $JohnsGaucherJourney

Https://gofund.me/ec844d77





After having some conversations with Palliative and Neurology today, we've decided to start John on a long-lasting opioi...
06/08/2026

After having some conversations with Palliative and Neurology today, we've decided to start John on a long-lasting opioid, and only use morphine as a back-up. The other option we discussed was increasing his clonazepam significantly, but I really hesitate to go that direction because of risks of respiratory suppression. Our neurologist also told me he would prefer the methadone, and it would really pain him to have to increase John's benzo.

This medication will likely be started on Thursday, and it takes between 5 and 7 days for it to build up in your system enough to make a positive difference.

This does not mean that we are giving up on our sweet John. He will continue to receive all his life-prolonging medication and therapies. But as painful as the past few months have been for our John, we are focusing very heavily on comfort care at this time. John deserves to be happy and pain free.





Good evening, friends. John is receiving his IG infusion this evening as we prepare ourselves for another week. Only 9 d...
06/08/2026

Good evening, friends.

John is receiving his IG infusion this evening as we prepare ourselves for another week.

Only 9 days more before we leave for DC, and we are very overwhelmed with everything left to do. Most of John's meds have been refilled early so we have plenty to take with us, except John's ERT med. Insurance has still not quite cleared it, but we need them to this week. Otherwise we have had our hotel reservations for several weeks, and other details are slowly pulling together.

One of John's rare disease funding organizations has suddenly made his account inactive. My understanding is that we did not use enough of his funds before a certain point this year. I will be spending quite a bit of time on a phone call tomorrow trying to sort that out, which will hopefully be an easy fix. We always use this money to pay for John's Immunology clinic appointment and labs, which cost $1,200 altogether. We absolutely cannot pay for this out of pocket, but we also can't cancel the appointment. We won't have another opportunity to see this doctor until April next year.

We have been so inactive on this page recently just because we are exhausted and overwhelmed. Physically, mentally, and emotionally, completely tapped out. It is hard to even think about adding a simple task like writing an update. Several nights this week we didn't even get to end our days until 3:00 in the morning. John's tongue biting is still out of control. John's neurologist has increased his morphine for now to give us more pain control until we can come up with a long term solution.

I have once again completely dropped the ball on $2 Tuesdays, but we do notice and deeply appreciate those of you who participate anyways. Every little bit toward this trip is so helpful to offset the cost and will help cut down on the months that we'll be paying this off. Thank you all. ❤️





Good evening friends. This has been a very trying 3 weeks for our John. From the horrible side effects of Augmentin, to ...
05/28/2026

Good evening friends.

This has been a very trying 3 weeks for our John. From the horrible side effects of Augmentin, to Cefdinir not being much better, to the bronchitis which seems cannot be 100% treated, to one of his high fevers which are attributed to dysautonomia, to still dealing with this horrible dystonia and tongue biting problem.

We are exhausted. We are heartbroken for our baby being in so much pain. We have had very little emotional energy for writing an update.

We do appreciate those of you who have continued to reach out, and we are sorry that we have not been able to provide anyone with long updates, or even regular responses. Please do not take this personally. We are not communicating normally with anyone.

In the past few days, John received his IG infusion on Sunday night, which actually seemed to perk him up substantially this time. He received his normal enzyme replacement infusion on Tuesday morning. (I did not share it this week, and so skipped $2 Tuesday, but if anyone would still like to participate this week that is absolutely always appreciated. We noticed and are thankful for those of you who remembered anyways!) And this morning John had a visit from his physical therapist, which is what the photo below is from.

Things that we believe are most important to keep praying about right now:

💛 John's lungs and breathing. A new sleep study has been ordered to find out why John's very high bipap settings do not seem to be working well for him anymore. We would really love for John to only need an oxygen cannula during the day, but his lungs are just too weak, and he simply can't breathe without his vent.

💛 Dystonia and tongue biting. John is frequently being woken up from his sleep crying and shaking from the pain because he is biting in his sleep. We are exhausting every solution our neurologist can think of, but cannot get a handle on this.

💛 NO SICKNESS. Please please please pray that John does not catch any type of illness, and has a healthy summer as much as possible. We really want to spend this summer making memories for our children, and want John to enjoy participating with his family.





05/20/2026

We did not get a picture today because John has not been doing well, but John had an appointment to establish care with Immunology at Children's Mercy today! We are still seeing Immunology in DC as our primary, but we needed a local immunologist to help coordinate care and fight insurance a little more easily with in-state orders, as well as have established care during inpatient stays.

As you all know, John had been started on a 14 day course of Augmentin 9 days ago to treat protracted bacterial bronchitis. I spoke with the on-call pulmonologist tonight, and we are stopping the Augmentin 5 days early. It has caused horrible neurological symptoms and made the last 9 days some of the hardest that John has ever had. Horrible dystonia, worsening tongue biting which was already out of control, shaking and trembling all over his body, pain that we've had to treat with morphine more often than usual... all onset with the start of the Augmentin.

The on-call pulmonologist offered a 5 day course of a different antibiotic to keep treating the bronchitis.

Please pray that John recovers quickly and fully from what the Augmentin caused, and that he will start having pain free days again. And that we can *finally* find what works for this tongue biting. We have tried everything. Our neurologist has even suggested that we might consider having John's teeth pulled at this point so that we can minimize the harm since it seems we can't stop the biting.

It has been such a long day, but John also received his weekly ERT infusion this morning, and it's $2 Tuesday for our upcoming DC appointments!
PayPal:
Venmo:
CashApp: $JohnsGaucherJourney





Happy Tuesday, friends! Enzyme infusion this afternoon. And John is responding pretty well to the augmentin this time so...
05/12/2026

Happy Tuesday, friends!

Enzyme infusion this afternoon.

And John is responding pretty well to the augmentin this time so far!

$2 Tuesday!

‼️ 5 weeks until we leave for DC ‼️

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

Https://gofund.me/ec844d77

🍯

Super cute "Brave Like John" stickers available!
$3 per sticker!
Perfect for your fridge, car, laptop, anything you want!
As with the bracelets, message us with your preferred payment method and mailing address!

🍯





PT this morning! We also did John's IG infusion last night but I forgot to get a picture. I spoke with John's pulmonolog...
05/11/2026

PT this morning!

We also did John's IG infusion last night but I forgot to get a picture.

I spoke with John's pulmonologist today about some issues we've been having since mid-March, not being able to completely clear out John's lungs. We are using every tool we have available to us here at home.
Shaker vest.
Cough assist.
Deep suction.
Albuterol (inhaler and nebulizer).
Atrovent (inhaler and nebulizer).
Symbicort.
Glycopyrrolate.
NAC (capsules and nebulizer).
Chest physiotherapy.
We have an extensive respiratory routine, often multiple times per day, but John's lungs still sound j***y.
Our pulmonologist believes it is Protracted Bacterial Bronchitis. He sent an order in for a 2 week course of Augmentin to treat it. John has reacted poorly to Augmentin in the past, with GI side effects that were very hard on him.
Please pray he would experience minimal side effects this time, and that it would be effective in clearing John's lungs and bringing oxygen needs back down. We have been very discouraged by John's oxygen needs (frequently between 4 and 5 liters even while on his bipap).
We very much do not want this to be the new baseline.





Happy Tuesday, friends! 🐰 John had his weekly enzyme infusion this morning! 🐣 Please don't forget about John's new shirt...
05/05/2026

Happy Tuesday, friends!

🐰 John had his weekly enzyme infusion this morning!

🐣 Please don't forget about John's new shirts! They are SO CUTE! 14 days left!!

https://www.customink.com/fundraising/johns_journey?utm_campaign=mobile-campaign-page-share&utm_content=johns_journey&utm_medium=social&utm_source=copy-link

🐰 Bracelets!! $5 each, message us with your address and payment method! Thank you to everyone who has been grabbing these so far!

🐣 6 weeks until we leave for DC! This is a reminder that all $2 Tuesday donations go directly toward this upcoming trip to see John's geneticist and immunologist in DC, and everything is so appreciated to help relieve the financial burden of these trips. 🥰

🐰 $2 Tuesday!!

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

Https://gofund.me/ec844d77





John working in PT this morning!
05/05/2026

John working in PT this morning!





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