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Aiden and AJs Fight for the Cure

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Oakhurst Manor, NJ
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.

01/26/2026

No news is GOOD NEWS!!!! It has been 80 hours since AJs spinal fluid culture was taken and 43 hours since his blood culture was taken…. If anything was flagged AJs complex care team at CHOP would have called mom, no matter the time, the second it would have showed positive for bacteria/infection. We have not received a call so it is very unlikely that anything will grow in those cultures from this point going forward. In fact, they discard spinal fluid after 3 days!!!! This is great news and extremely promising that AJs wonky numbers and symptoms/fevers are in fact viral related. He still has his moments of whining and being bothered by something but today is definitely better than yesterday!!! Hoping our little squish keeps the upward trend 📈 and we kick this ick soon 🙏🏻💜🙏🏻💜

01/25/2026

Poor AJ spiked a low grade fever last night at 10pm, so we made the trip to CHOP and arrived at 12am. After extensive testing and lots of pokes, his complex care team is confident it is not his spinal port. We are still waiting on blood cultures but hopeful his discomfort is likely viral and not infection related. He was discharged at 7am and able to sleep in his own bed. We are praying his blood cultures will show no sign of a port infection but we will know more tomorrow morning. He was a brave boy for all of the doctors and nurses!!! Lots of snuggles from mom for now and hopefully as the days go by he will be back to his happy self 💜🙏🏻💜🙏🏻

01/22/2026

Prayers for AJ! His numbers after dosing came back wonky and we have to watch him closely for a few days to make sure he doesn’t spike a fever! If he does it’s an automatic admission to CHOP to make sure he doesn’t have any bacteria or infection in his spinal fluid… so many prayers are appreciated for our brave boy 🙏🏻🙏🏻🙏🏻

01/10/2026

It’s been a rough winter for the boys. Lots of ick going around and we have caught all of it! We made the most out of the holidays at home even though we are used to being with family every year. Mom is trying to make a special vacation happen to Disney this year to brighten their days so stay tuned for ways you could help…. It would be greatly appreciated and most certainly will bring smiles to Aiden and AJs faces 💜🙏🏻💜🙏🏻 After all the illnesses they have gone through they deserve a much needed happy and healthy vacation

12/24/2025

Although AJ is down with the flu and our Christmas is being spent much quieter this year (at home just the four of us), we are still super excited for Santa to visit us while we sleep and bring us gifts 🎄❤️💚🎅🏼

Merry Christmas everyone💜💜
Love always, Aiden and AJ

12/15/2025

Aiden and AJ had a very special visitor today!!! Santa couldn’t believe how much they’ve grown! He also said that they BOTH 💯 definitely made the nice list but Aiden has to keep his teenager “tude” in check and not be such a sir-sass-a lot with his mama 🤣🤣🤣

11/01/2025

Happy Halloween 🎃

Love always,
Aiden and AJ (errrrr Peter Pan and Hook🪝)💜💜

10/17/2025

AIDENS MRIs ARE 💜STABLE💜 no change 🥳🥳🥳
Thank God 🙏🏻🙏🏻🙏🏻🙏🏻

10/16/2025

Update on Aiden***

It has been a rough couple days for Aiden, but he is finally on the mend! When they intubated Aiden they scraped his entire airway from his nostril all the way down to his vocal cords. Poor boy was pretty upset, and so were we! His right nostril is 100% blocked. We have steroids on board to help with the inflammation and his pediatrician added a hefty dose of antibiotics to prevent any infection. Poor boys right upper eyelid is also pretty swollen either from the intubation and blockage, or the lubricant that they caked in his eyes while he was sedated for 4 hours. We do not have MRI results back yet but his carpal tunnel results are mild to moderate so another carpal tunnel release surgery is in Aiden’s near future. This will be Aiden’s second carpal tunnel release surgery. Last night he finally turned the corner and we are heading in the right direction towards recovery. Poor boy, all to get his yearly MRI imaging.. Any procedure big or small under sedation is never an easy task for both boys and always carry a great risk! I was going to keep Aiden home again today from school but when the bus pulled up he tried to run out the door with AJ so I let him go and told his teacher to call me if he gets upset at all while there. They are waiting for him with lots of gentle snuggles, love, and all his favorite toys! After all he is their “baby boss” 💜🙏🏻💜🙏🏻

Thank you all for praying for him and staying with us on this journey… now it’s time to get ready for Halloween 🎃 👻

10/14/2025

Prayers for Aiden appreciated… he is currently fully intubated (nasally 👃, which is the not the most gentle kind of intubation) for 4 procedures and imaging!! So many prayers that there are no complications please

09/07/2025

My Aiden 💜 My little lover, boss baby! The one who first gave me the greatest title of my life, Mommy… I can not even believe you are 14 today! Happy Happy Birthday my little “grump master flex”!!!!!! I love you with my entire heart and soul and I hope you have the best year yet filled with miracles and happiness and love!

Xoxo mommy

08/24/2025

A beautiful night celebrating all special little warrior souls!!! Art from the Heart….. No child ever fights alone 💜💜

xoxo Aiden & AJ

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