Please help Maisyn and her parents through her treatment for Hurlers Syndrome which has just begun.
We want to make people aware of Hurlers syndrome
Auckland
The day our whole life changed 02/04/2024
On this day, our sweet girl Maisyn was diagnosed with a rare genetic condition called Hurlers Syndrome or MPS I.
We were told one whole year ago, by our Plunket nurse, that Maisyn could potentially have a syndrome, and were referred to paediatrics twice and both times were declined. We were also referred to genetics twice, first time declined and then approved on the second time, but with an 11 month wait. It wasn't until we met with an ENT doctor who pretty much took one look at Maisyn and knew something wasn't quite right and urgently referred us to paediatrics. That was on the 18th of March this year and from then till now has been an absolute Rollercoaster of emotions.
We have the best support system ever and we couldn't do this without all of you, honestly.
Ryan, Tegan and Maisyn 🩷🩷
Basil Weyers' involvement (page creator)
We are her loving grandparents all 6 of us
Use of funds
The money will be used to help out with costs for transportation, Food, Bills (rent,power etc ) while Maisyn is going through her treatment and her mom cant work.
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Latest update
Finally Home 13 June 2024
And just like that... WE ARE HOME!!
After 32 days in hospital, day +21 post transplant, we got to leave and come home to comfort! We are so unbelievably proud of our girl, she has absolutely smashed this whole process, she has showed us just how absolutely strong she is and how much she can handle. She has blown everybody away, quoted a "textbook transplant" and all (majority of the time) with that beautiful smile on her face.
Don't get me wrong, there were extremely hard days, and it was very sad to see her so sick, but this will all be worth it to see her live a longer, more fulfilling life.
Maisyn, I hope you know how loved you are and how many people were cheering you on behind the scenes, and we appreciate all the genuine support and love!
We still have a long way to go, and we aren't out of the woods yet, but we take each day as it comes and if the last 32 days are to go by, she will smash whatever comes her way. Keep on keeping on my little warrior princess. Your mum and dad love you more than you can ever imagine
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