Aiden and AJs Fight for the Cure

Aiden and AJs Fight for the Cure On December 3rd 2014, these brothers were BOTH diagnosed with a rare terminal genetic disease called mucopolysacharidosis ll, or hunter syndrome.

Update since both boys have been on new drug AVLAYAH(lowest dose with added steroid premed)::::Aiden and AJ have general...
07/29/2026

Update since both boys have been on new drug AVLAYAH(lowest dose with added steroid premed)::::

Aiden and AJ have generally been much more happy and cracking up from the time they wake up until they go to sleep at night. All doctors are convinced it’s because they don’t have so much inflammation anymore in their little bodies. They are able to attend to task and do more work groups in school ALL DAY LONG without needing several breaks. We also notice more verbal language coming back for both boys. Aiden says “cereal, tea (iced tea), and JJ (AJ) consistently!!!!!! We are cautiously hopeful mama will come back very soon 💜💜💜 AJ is able to write his name again too 🥳🥳🥳
They have jobs at school as “mailmen” and they clearly take their position very seriously!!! Great job boys… keep beating the odds 🙏🏻💜🙏🏻💜🙏🏻💜 we will infuse this week at the same lowest dose then try to up the dose next week 💜💜

I didn’t post a picture of AJ yesterday because his reaction was scary and quite honestly heartbreaking to witness but t...
07/16/2026

I didn’t post a picture of AJ yesterday because his reaction was scary and quite honestly heartbreaking to witness but this is his residual response to the reaction on his skin 😰 So you can only imagine what our baby went through 🥺

Unfortunately BOTH boys had pretty gnarly reactions the last 10 minutes of flush (around 4th hour of infusion). They nee...
07/16/2026

Unfortunately BOTH boys had pretty gnarly reactions the last 10 minutes of flush (around 4th hour of infusion). They needed emergency medical intervention and was administered IV steroids, antihistamines, antihistamine blockers, Tylenol and Zofran. Mom was scared and cried as she held AJ and kept telling him he was going to be ok. I won’t show a picture of AJ because it was pretty scary and super sad to see him that way. There were at least 6 nurses and 3 doctors all focused on the boys. Thankfully the intervention eventually helped both boys. We are reassured that both the boys will definitely be able to tolerate this new drug we just have to slowly work with their bodies to figure out the best course of pre medications along with the best infusion speed that they can tolerate safely. Please continue to pray for both boys. Today took a big toll on all of us 🥺 but we must focus on the positives and the hope that this drug will bring to us all.

Infusion # 5 of AVLAYAH! This is a planned increase in dosage. Praying all continues to go well. We are currently an ho...
07/15/2026

Infusion # 5 of AVLAYAH! This is a planned increase in dosage. Praying all continues to go well. We are currently an hour into the 4 hour infusion and so far so good 🙏🏻🙏🏻🙏🏻

07/15/2026

Thank you endlessly for all of your prayers for AJ!!! He absolutely ROCKED 4 hours under anesthesia 🙌🏼🙌🏼🙌🏼

Many prayers appreciated for our AJ! Tomorrow he has to go under general anesthesia for a few hours for some testing and...
07/14/2026

Many prayers appreciated for our AJ! Tomorrow he has to go under general anesthesia for a few hours for some testing and procedures…. As I’ve mentioned before anesthesia is very tricky and can suddenly become very dangerous for any child with Hunter Syndrome especially boys with critical airways like AJ. He has an entire team of medical doctors that won’t leave his side to make sure he is safely intubated and extubated tomorrow. Prayers for stability and an uneventful intubation 🙏🏻🙏🏻🙏🏻 mommy’s a nervous wreck for her little squish 😰🥺💜

06/19/2026

Yesterday was a monumental day for my family!!! The boys started their life saving meds…… no words just eternally grateful for this miracle 🙏🏻🥰💜

Aiden is graduating 8th grade 🥳💜🥳Unfortunately he won’t be able to walk on stage and graduate with his peers because we ...
06/12/2026

Aiden is graduating 8th grade 🥳💜🥳
Unfortunately he won’t be able to walk on stage and graduate with his peers because we are scheduled at CHOPs infusion center for our second dose of the new treatment… I’m hoping we can have a separate little graduation for him on another day….. Enjoy our little lovers graduation pic 🥰🥰🥰

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Oakhurst Manor, NJ

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