Cody’s Fight for Time

02/08/2026

No parent should ever have to think about signing their child's death certificate. Childhood dementia is cruel, devastating, and takes away everything too soon—but we aren't giving up. Without treatment, time is running out. Please consider sharing or donating if you can. 💜

01/08/2026

The real magic was watching him. When your time is limited, memories become your most precious treasure. So grateful for these days with Cody. ✨❤️

11/07/2026

Cody’s Fun Day is fast approaching! 🎈

We really need some help stocking our tombola. If you have any bottles lying around the house—maybe a bottle of wine or spirits you received for Christmas that just isn't your thing—please consider donating it to us! 💜💜 Every bottle helps make the day a success.

10/07/2026

Solar-powered kid. ☀️🔋 Just recharging in the sun.
The venue? 0/10. The sleep quality? 100/10. 😂

07/07/2026

"The doctors told me to take him home and give him all my love.” 💔

06/07/2026

Hi everyone, I wanted to share a quick update on Cody after what has been an incredibly scary and exhausting weekend for our family.
As many of you know, Cody has Sanfilippo syndrome. Because of his condition, even a simple cold can be really dangerous. Sanfilippo makes it much harder for him to clear fluids from his airways and fight off bugs, meaning a minor sniffle can quickly turn into something much more serious. Kids with Sanfilippo typically have much thicker mucus and smaller airways.
On top of dealing with a cold, we had a major scare this weekend. He managed to chew the end off a straw bottle and choked on it. I gave him some back blows and removed some larger pieces but not all of the straw top. Because the doctors were worried he might have swallowed or breathed in (aspirated) fragments of the plastic, we were blue-lighted from the QE over to the RVI.
Once we got there, he had to have a small operation so the doctors could put a tiny camera down into his lungs to check his airways.
The good news: They didn't find any plastic fragments!
The tough news: The camera showed a lot of heavy secretions built up in his lungs. That simple cold he had had unfortunately traveled down and turned into a chest infection.
He is currently on IV antibiotics at the hospital to clear everything out. He’s being an absolute superstar, and if everything goes well, we are hoping to finally get back home tomorrow.
Thank you all so much for the love and support. We are looking forward to getting him back in his own bed and getting some rest. 💜

29/06/2026

Loving you through a diagnosis that steals your memories means making sure every single day is filled with a lifetime of love. Sanfilippo syndrome is childhood dementia, and the world needs to know about it. 🧠💜

28/06/2026

For families affected by Sanfilippo Syndrome, this heartbreaking reality is their daily life. Often called "Childhood Alzheimer’s," Sanfilippo is a rare, fatal genetic condition that aggressively attacks a child’s brain and nervous system.
What exactly is it?
Children born with Sanfilippo are missing an essential enzyme that breaks down natural cellular waste. Because their bodies can't clear it out, this waste builds up in the brain like a toxic logjam, causing permanent and progressive damage.
How it progresses:
The early years: Children often seem completely healthy at birth. Early signs usually look like mild speech delays, hyperactivity, or frequent infections—meaning it's often misdiagnosed as autism or ADHD.
The loss of skills: As the condition progresses, children lose the abilities they’ve worked so hard to learn. They lose their speech, their ability to walk, and eventually, the ability to swallow.
The ultimate fight: Currently, there is no cure, and most children with Sanfilippo do not survive past their teenage years.
Why sharing this matters:
Because Sanfilippo is incredibly rare (affecting roughly 1 in 70,000 children), funding for a cure relies heavily on everyday people spreading the word. Scientists are working on incredible breakthroughs right now, including gene therapy.
Please take a moment to Like, Comment, or Share this post. Every share helps put this rare disease on the map and brings us one step closer to a cure. 🧬✨

27/06/2026