1 MILLION STEPS REACHED!!!! ❤️And a blog dedicated to the greatest Gaga ever!❤️

Well I've done it! Over 1 million steps reached between April and now! 1 million steps reached for ehlers danlos! It's been a really tough journey, especially spending the last 2 weeks struck down by the flu. I had to take it easier while recovering from the flu but still made sure to get my steps in every day, with tissues in hand and a warm bottle of lemsip! 

When I started this journey, my health was the worst it's ever been. And before this journey, I was already active ensuring I walked 10,000 to 20,000 steps a day to prevent my connective tissue from deteriorating as fast. But my health, my gastroparesis was the worst it had ever been, my heart was really struggling and I felt like my body was shutting down. We have a public health system that should be helping us but due to the state of the health system, those with multidisciplinary needs like myself had started being pushed out of the public system last year and help has become harder and harder to find and it comes at a huge financial burden. 

I was able to try a hail Mary with the help of my absolutely incredible and selfless mother, Wendy, or as my 8 year old son would say, his Gaga. And I was able to start a new treatment at $1,300 to $1,600 every 2 to 4 weeks in the hopes of getting my stomach and GI tract working again. The first two months didn't show much promise but finally, something I hadn't felt in a long time started to return, the sensation of hunger. A sign my paralyzed stomach was begining to move again. But after being on a liquid diet for a year, it was hard to simply move back to eating again and I had to go through a sort of re-feeding again and start using muscles in my throat that I haven't used in so long. Slowly but surely, things are finally starting to improve and I was able to go out for dinner with our Gaga and actually sit down and enjoy a meal! While the treatment isn't going to be a permanent solution, and the risk of developing tachyphylaxis within 3 to 6 months (a resistance to the medication) is extremely high, it's at least going to give me a few months of relief while other options are explored. 

Being able to have our Gaga come down and spend the week with us and show her the progress that wouldn't have been able to happen without her help and being able to experience meals with her ended up being the greatest highlight of 2025! And words can't begin to express how lucky my little family and I are to have such a kind and caring Gaga. It's hard knowing the amount of financial pressure this has put on her and feeling like I've become a burden on her but she's really shown so much support and reminds me that my 8 year old and I aren't going through this alone.

So what's next? May/EDS awareness month isn't over and I'll continue to walk as many steps as I can until the end of the month. And I'm planning on doing a hike from Hamilton to Wellington to further raise awareness for ehlers danlos and hypermobility spectrum disorder and fight for reform within our health system. Right now the government is so focused on cutting down waiting list times and saving money within our public health system but it's coming at the cost of so many patients like myself that require multidisciplinary care have become invisible and have fallen through the cracks. We are forced into seeking help from the private sector which comes at such a huge financial burden many of us can't afford. And it's not just a burden we carry alone. Our families and friends become burdened by the expenses that we can't afford on our own and it shouldn't be a burden they have to carry when he have a public health system that should be helping.

So I'll continue to share my story, my little family's story in the hopes maybe one day the right person will hear it and changes can be made. 

Here's to 1 million steps and many more to come! And here's to an amazing momma/Gaga that helped get this campaign off the ground and has greatly supported us for the past year. I know sometimes I'm not the best at showing it but we are so soooo lucky to have you as our momma/Gaga and words can't begin to express how so incredibly grateful I am for all of your help, love and support and how greatly your generosity and kindness has completely changed my quality of life even though it came at such a huge expense to you. We couldn't ask for a better gaga/momma and hopefully one day I can repay you for carrying such a heavy burden that you shouldn't have had to. It meant the absolute world having you come down and see the amazing transformation that wouldn't have happened if it were not for your selflessness and kindness. Being able to actually enjoy a meal together, something I never thought would be able to happen ever again, will be a memory that I will cherish forever! The ability to eat and go out for a meal is something so many take for granted and being able to have my first real meal (beyond mushed up wheetbix) with you, because of you, I am just so grateful to have been able to experience that moment with the people I love the most ❤️ 

And of course thank you to all the incredible people who donated and shared our story because it was all of you that kept me going during the tough pain days, the days I was under the weather and motivated me to keep going. This campaign has become so much more than raising awareness for ehlers danlos and ended up showing me how many people I'm so fortunate to have in our lives who donated and supported my campaign. 

So thank you to everyone who donated and supported my campaign and most importantly, thank you to the most incredible, kind, caring, loving and supportive momma/Gaga! These 1 million steps and blog post are dedicated to you because without you, it wouldn't have happened. 🫶🫶🫶❤️❤️❤️😍😍😍💛💛💛💖💖💖💞💞💞💕💕💕💝💝💝

This won't be the last blog post, there will still be more to come! 

❤️❤️❤️❤️❤️