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
Day 0 18 May 2024
Day 0 - cord blood infusion day!
The day has finally come for Maisyn to get her new cells and start a new journey! Mixed emotions and feeling all the feels today.
Maisyn has been doing well, she has been a lot more sleepy and grumpy the last couple days, could be the start of mucositis which is a side effect from the chemo and can be very painful so she is on pain relief but still in relatively good spirits when she is up and awake.
We've been told the next week or two will be the worst in terms of pain for Maisyn as this is when we will start to see the side effects from the chemo, so giving her all the snuggles to keep her happy. Now we just wait for those new cells to start growing!!! All the positive vibes our way please!!
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