More than 1.5 million steps reached but the fight isnt over! New Jewellery Line by Louie

Well the end of EDS awareness month is over and I was able to reach more than 1.5 million steps since I started mid April. But the fight isn't over! I'll still be continuing to fight for change. And with rising medical expenses I'm still hoping to continue to be able to raise money for the Ehlers-Danlos Society and for Louies medical expenses. 

The past month hasn't been easy, I've fought through the flu, a month long cold and and complex regional pain syndrome flare up. But I couldn't be prouder to have surpassed my goal! And I'll continue to keep fighting to get the message out there because this isn't just an hypermobility spectrum disorder or Ehlers-Danlos issue. So many people with multidisciplinary needs are being excluded more and more from the public health system and we've been forced to go private. Some months it's totalled up to $10,000 a month, just for myself. And for what I've paid, I'm barely any better off. And I've had to take drastic steps to ensure my 8 year old Louies future which includes having to take out life insurance and look into euthanasia so the policy will be able to pay for the surgeries he'll need that I couldn't afford for myself. And I know I'm not the only mother having to seriously consider euthanasia and life insurance. 

Don't worry, I'm not planning on doing it anytime soon. But I am hoping to keep fighting so changes can happen, patients like us with multidisciplinary needs can be accepted back into the public system and the surgeries we need can be made available in New Zealand because $180,000 is a huge financial burden for patients like myself who need to go abroad for surgery just to be able to eat again. And a surgery that my 8 year old is most likely also going to need. So hopefully with the fight carrying on, more mothers like me won't have to consider taking such insane steps so their kids don't have to carry the financial burden of having a rare condition in a country that doesn't want to treat us. 

Even though EDS awareness month is over, I'm really hoping this month I can get my story out there more because I know the likelihood of raising $180,000 is extremely low. And that's just for the surgery and doesn't even begin to cover the life long expenses for my son. So I'm going to keep fighting for change to happen to anyone who will listen. 

My 8 year old is now making EDS awareness jewelry and keychains to help with our current medical expenses and will continue to make pins. So more products will be added over the next coming days and weeks! And 50% will continue to be donated to the Ehlers-Danlos Society because they're trying to fight just as hard as I am. 

So thank you to everyone who has supported me over the past month and a half. In May alone I was able to hit over 1 million steps AND more than 500,000 steps from mid april to the start of May! And I'm hoping to plan a hike from Hamilton to Wellington to protest for reform if my health will allow for it, as it'll take a few months to recover from my 1.5 million steps!

So thank you all and I'll continue to post updates!