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.
Other page links
Latest update
The treatment starts 9 May 2024
(Day 0 is cord blood infusion day)
Maisyn had her first round of ATG which is an immunosuppressant drug that reduces the T cells which in turn helps prevent graft rejection and also graft vs host disease.
She did so so so well, I'm so proud of her. She hasn't reacted at all, had a very slight temperature at one check but that came down at the next check and we are now done for the day! She had a slight moment during the day where she was quite upset and grumpy but I think she was just extremely tired as we were up before 5am this morning!! A quick nap on mum and she was good to go. Couldn't ask for day one to go any better! Long road to go, but all we can do is think positively!
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