Harry & PA

Harry & PA This is a page for all things Propionic Acidemia and our son Harrison’s journey with the condition

Certificate says: “Congratulations on completing another amazing NAPA intensive, Harrison! Your determination and can-do...
20/09/2025

Certificate says: “Congratulations on completing another amazing NAPA intensive, Harrison! Your determination and can-do attitude impress us every single day! It’s been amazing to see your super-strong legs as you power up and push your scooter through NAPA with so much more control and stability. You’re also showing off your slow and controlled knee bends as you sidestep down from the 20cm box. Oh, and we can’t forget about your newfound sense of balance on the shakey plate, you have found your core and strengthened it so much that now you can sit straight independently and for longer. It was fun doing sit ups on the exercise ball while rescuing the animals in rainbow order or tapping those blazepods. Your tongue and jaw have gotten stronger too, biting, chewing, and finding the z-vibe with your tongue. You are getting so good at biting, chewing, and sending your food to your belly (even when your belly is down in your toes)! Your communication has been amazing, and we have loved hearing what you’re thinking and hearing you advocate for yourself. Keep up the hard work Harrison, you have smashed all your goals and we can’t wait to see what you do next!”

It’s Tube Feeding Awareness Week! 🥦🩺We are a proud tube-feeding family. Harry receives 95% of his nutrition through his ...
02/02/2025

It’s Tube Feeding Awareness Week! 🥦🩺

We are a proud tube-feeding family. Harry receives 95% of his nutrition through his feeding tube. His diet includes a mix of homemade blended food, enteral feed, formula, and water.

One day, we hope he won’t need it, but for now, his feeding tube (PEG) keeps him strong, happy, and thriving—it’s truly life-saving. 💪🏼🦾❤️

For anyone who lives in Hobsons Bay, pick up the Star Weekly out today to see a very handsome little boy ready for his f...
30/01/2024

For anyone who lives in Hobsons Bay, pick up the Star Weekly out today to see a very handsome little boy ready for his first day of school today!!

DonateLife

For those that don’t live here check him out here:

Read Star Weekly - Hobsons Bay Maribyrnong - 31st January 2024 by Star Weekly on Issuu and browse thousands of other publications on our platform. ...

We try and come back to Whangamata (NZ) every year for a few weeks. Harry just loves the beach and outdoor lifestyle, hi...
09/01/2024

We try and come back to Whangamata (NZ) every year for a few weeks. Harry just loves the beach and outdoor lifestyle, his Nana and Pop live right by the ocean.

Our tube feeding has changed over the years. And our threshold for ‘clean’ feeding standards have changed now too. Now ‘clean’ is a rinse of hands in the ocean 😂.

Although his oral intake is very slowly increasing, Harry has 4 feeds a day. Each feed is made up of 7-8 60ml syringes and is a mix of blended food (sometimes home-made, sometimes ), formula and water.


Where’s the weirdest place you’ve tube fed?

Once a month Harry will receive something called IVIG (Intravenous immunoglobulin). Harry’s immune system isn’t making a...
03/08/2023

Once a month Harry will receive something called IVIG (Intravenous immunoglobulin). Harry’s immune system isn’t making antibodies properly. We’re not sure why, could be linked to his PA.
But what this liquid gold does is give Harry antibodies from 1000s of blood donors from all over.
He’s unbelievably brave and well behaved sitting in his chair once a month for a couple of hours while the infusion runs.
We are very thankful to be approved for this treatment, and thankful to all those blood donors out there that make this possible!

Harry’s story for donate life week
18/07/2023

Harry’s story for donate life week

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