Praying For John

Praying For John John was born with an extremely rare neurogenetic disease, Type 2 Gaucher's Disease. There is no cure, and treatment is uncertain. Follow this page for updates!

John and his family need your prayers and support.

UpdateJohn is now sleeping peacefully. The motrin seems to be enough to calm the pain for now. Very thankful for our swe...
10/01/2025

Update

John is now sleeping peacefully. The motrin seems to be enough to calm the pain for now.

Very thankful for our sweet baby 💚

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10/01/2025

Another difficult respiratory treatment tonight.

John seems to be in quite a bit of pain, but we are uncertain what is causing it. Please pray that his OTC med will calm the pain and John will be able to sleep well tonight.

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11 DAYS LEFT FOR THESE SUPER CUTE SHIRTS!! 😍🥳😍🥳Go grab one or a few to support our family and make continued medical tre...
09/30/2025

11 DAYS LEFT FOR THESE SUPER CUTE SHIRTS!!
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Go grab one or a few to support our family and make continued medical treatment accessible for John! 💚💚💚

Www.yourenotaloneco.org/john

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09/30/2025

Our John is not happy about being woken up for midnight respiratory treatment. His asthma has been worse than usual today, and he refluxed some of his meds and vitamins this morning (which is very rare for him), so we are worried he might have aspirated some as well.

It can be discouraging to us that things can change so quickly ,often times overnight, and when we think he is doing better, something else happens. We just want our baby to be completely healthy and happy.

Pray for our sweet baby tonight, and that he would wake up feeling better in the morning, and pneumonia would not result from the reflux this morning.

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09/30/2025

NEW ROUND OF T-SHIRTS! 🥳🥳🥳

These come in long and short sleeves, and are SO CUTE! 😍

HUGE thank you to You're Not Alone Co for reaching out wanting to create a new fundraiser for us! ❤️

Their message could not have been better timed as we are still trying to pay off debt from the past year of frequent travel and what seems to be constant medical appointments, which means my husband is constantly missing work. Our state does pay me to care for John, but not nearly enough to begin making up for the work my husband has to miss. And I do not get paid while we are inpatient, so we are still recovering from this most recent 11 day admission.

We have a big medical trip coming up in the spring, during which we need to see Genetics and Immunology in DC, Neurology in NYC, and Neurology/Pulmonology in NJ. 💪🏻💛💪🏻 We would really like to have this last year paid off first, so that we can save for this next big spring medical trip without the stress of last year's financial burdens.

You can order your shirt at the link below, and please share with everyone you know!!! 💛 Orders will be open for TWO WEEKS! 💛🙏

Http://www.yourenotaloneco.org/john

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Also including other options if you want to donate but do not want a shirt! We are so grateful for this community. 🥰

❤️ Https://gofund.me/ec844d77

❤️ PayPal: Julie Gorodetzky

❤️ Venmo: Julie Gorodetzky

❤️ CashApp: $JohnsGaucherJourney

John is feeling quite a bit better from last night! ❤️ Thank you all SO much for praying so diligently for our sweet Joh...
09/29/2025

John is feeling quite a bit better from last night! ❤️ Thank you all SO much for praying so diligently for our sweet John. ❤️❤️❤️

We are very very thankful to be able to attend worship this evening, which is likely our last week until April. 😞 We had to stay out of worship last winter too, as illness just spreads so easily, and we are not certain that John would survive another round of RSV, or covid, or flu. So to keep him as safe as we can, we will be staying home for the next 6 months with very few exceptions.

Please continue to pray that the Lord would protect John from illness this season, and that John would have a healthy and happy winter. 💛

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Happy national Son's Day to these very sweet boys! We love you, Mark and John, and are so grateful the Lord gave you bot...
09/29/2025

Happy national Son's Day to these very sweet boys! We love you, Mark and John, and are so grateful the Lord gave you both to us. 💙💚

John had a hard evening with his breathing. He still has quite a ways to go in his recovery from the rhino virus. Its he...
09/28/2025

John had a hard evening with his breathing. He still has quite a ways to go in his recovery from the rhino virus. Its heartbreaking that a common cold always hits him this hard. 💔

Please pray for him that he would improve greatly overnight and have a much easier day tomorrow. It is so hard to see him struggling.
He is now sleeping very peacefully on his bipap, but we would really like him to be able to tolerate more hours on nasal cannula tomorrow.

Picture of enjoying snuggles with Daddy after shaker vest and deep suction tonight. 💕

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Infusion at home this morning. Our John was so sleepy; he fell asleep 10 minutes after this picture. 🥰 🦓🧬 💙 🙏 💪🏻 🦓...
09/26/2025

Infusion at home this morning. Our John was so sleepy; he fell asleep 10 minutes after this picture. 🥰

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Pediatrician appointment for John! 💪🏻We got a new cream for John's face rash and got a referral to dermatology at Childr...
09/24/2025

Pediatrician appointment for John! 💪🏻

We got a new cream for John's face rash and got a referral to dermatology at Children's. Really hoping something works soon. He has had some kind of rash on his face ever since one and a half days old, when we started antibiotics in the NICU. I am so ready to finally get this cleared up. 🙏

After a lot of research into the RSV antibody shot Nirsevimab (Beyfortus), we chose to get it for John today. This was a careful decision after months of researching each individual ingredient and how it could interact in John, as well as conversations with our pediatrician, pulmonologist, geneticist, and Immunologist who all weighed in. I also spent time talking to some of the other Gaucher mamas whose babies got Nirsevimab, and was relieved to hear that none of the other babies reacted to it. (The RSV antibody shot that John received today is NOT the same as the RSV *vaccine* that is available for older adults who are at risk for complications from RSV.)

John is absolutely thriving as far as physical growth. He has grown an entire inch in length in the past 3 months, measuring at 31 and 3/4 inches. He weighs a pound and a half more than he did 3 months ago, weighing in at 12.5 kg (12 and a half pounds!!), landing him in the 85th percentile for weight! Go John go!!!! 😍

We got a referral to a clinic at Children's who will measure John for a wheelchair or special stroller as well. He is growing out of baby equipment very quickly! 🙌🏻

So proud of our John! He has continued to push forward and make progress, and doesn't let anything stop him. 🥰

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Kansas City, MO

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