Noah’s Highs & LOWES

Noah’s Highs & LOWES Lowe syndrome effects his eyes brain & kidneys.

A page to document our journey as we are Living with Lowes. is a rare genetic mutation that impacts 1 in a 1/2 million people it also almost exclusively affects males.

06/23/2025

Just a quick vent : It’s so frustrating when you call to schedule your little ones next dental appointment 🦷 because he’s due for a cleaning and find out they are no longer in network with your insurance😔 we finally got used to this appointment and they gotused to us! We wouldl go in first and be seen quickly because he rarely cooperates, all the things. Now having to find someone new or implement change for Noah is typically a hard feat .. signed annoyed mom 😒

It’s a rainy day today waiting on the bus ☔️
05/07/2025

It’s a rainy day today waiting on the bus ☔️

Today is rare disease day! Our little guy is Rare to say the least. Noah was born with Lowe Syndrome. He has endured a t...
03/01/2025

Today is rare disease day! Our little guy is Rare to say the least. Noah was born with Lowe Syndrome. He has endured a total of 7 surgeries since birth to remove cataracts from both of his eyes, bring down an undescended te**ee, place and remove a g tube and remove multiple teeth due to dental abscesses! While he is thriving and our little warrior at times Lowe Syndrome can be incredibly challenging, and it takes a lot of strength and resilience to navigate those health battles. Today, being Rare Disease Day, highlights the significance of raising awareness for conditions like Lowe Syndrome. Hoping to find that every story shared helps bring more understanding and support to the rare disease community.

02/14/2025

Anyone else have success in patching the weaker eye. Noah is not having it and will not allow us to even get close to putting the patch on and even when we did get it on he continues to scream and fight till he gets it off!! We have tried the stick on ones and I’ve tried just scotch tape on his lenses. Not a fan ! Any advice is totally welcome!

Just wanted to come here and say how grateful I am that Noah’s palate has finally expanded. Some of his favorite foods t...
02/14/2025

Just wanted to come here and say how grateful I am that Noah’s palate has finally expanded. Some of his favorite foods these days are scrambled eggs, chicken nuggets, spaghetti, and oatmeal! For awhile I thought he would be eating grits only for the rest of our days 🤭 having him eat lunch at school has helped with this process so much!

01/20/2025

For those who may be curious, this wonderful day at home is going great, thanks to my little super star who has just mastered turning on his karaoke machine! 😅

We have the best bus people 🤩Sorry to all my neighbors if you were disturbed by the continuous honking earlier this week
01/17/2025

We have the best bus people 🤩
Sorry to all my neighbors if you were disturbed by the continuous honking earlier this week

Noah James conquered many sensory issues this past week . Things like walking in sand , rocks, pebbles and having dirty ...
11/29/2024

Noah James conquered many sensory issues this past week . Things like walking in sand , rocks, pebbles and having dirty hands to name a few. Not to mention this gem walking straight up to Santa jumping up into his lap and stayed for pictures 🤩

Today Noah’s class dressed like aliens for trunk o treat 😍
10/30/2024

Today Noah’s class dressed like aliens for trunk o treat 😍

We are having way too much fun at school for spirit week 😁
10/30/2024

We are having way too much fun at school for spirit week 😁

This handsome fella 💙💚
10/01/2024

This handsome fella 💙💚

09/27/2024

Translation “Good Listening!”

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Belle Chasse, LA

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