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Please help Maisyn and her parents through her treatment for Hurlers Syndrome which has just begun.

  • Day 0

      18 May 2024
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    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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    • 20/05/2024 by Trinity

      I love you little one my you heal well love and respect to mum and dad

  • Was International MPS Awareness Day Yesterday

      16 May 2024
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    It is International MPS awareness day today, but what's really sad is that I can't find anything in NZ about this day or it being "celebrated" here 😔 so here I am, trying to bring more awareness to anyone this will reach.

    MPS are rare genetic disorders in children and adults caused by the absence of a specific enzyme.

    In Maisyns specific case, she has MPS I otherwise known as Hurler Syndrome which is a rare disease in which the body is missing or does not produce enough of an enzyme needed to break down long chains of sugar molecules. As a result, the molecules build up in different parts of the body and cause various health problems.

    When Maisyn was first diagnosed, she had to undergo so many tests to see what damage had already been done to her body and to make sure that we could proceed with the treatment, chemotherapy and a stem cell transplant, which she is currently undergoing.

    Both Ryan and I carry a copy of this "broken" gene and there is a 1 in 4 chance of having a child with this syndrome.

    Maisyn is the most amazing, strong, resilient, cheeky, sassy, independent little girl and we would not change her for the world. She has taught us so much in her short little life and will teach us so much more along the way. I couldn't be more proud to be her mum and as much as I wish we didn't have to go through all of this, we are all going to be so much stronger for it.

    Love you baby girl, more than you'll ever know. 🩷🩷🩷

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  • Maisyn has now finished her four rounds of ATG

      13 May 2024
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    Maisyn has now finished her four rounds of ATG and this afternoon will start the chemo drugs. She's done so well, fever on the first night, slight one on the second night, puffy red eyes, little bit of a rash, some wafts of oxygen when sleeping and a bit tired and grumpy, but overall relatively non eventful. Super proud of her. She has now had a nasal gastric tube fitted as she was refusing to take her oral meds, and even though it is a visual reminder of her sickness, it means we don't have to fight her on the daily just to give her the meds she needs and soon she will also lose her appetite and will need to have her nutrition through this tube. Super proud to be her mum, keep fighting my little brave one.

    Also, happy mothers day to all the mums out there! I hope you all have the most amazing day and make sure you hug your little ones extra tight!!! ❤️❤️

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    • 13/05/2024 by Trinity

      I’m so proud of you little one you are so brave and strong god bless you and your family love and support to you maisyn

  • The treatment starts

      9 May 2024
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    (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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  • First day of many

      8 May 2024
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    And we are admitted for the long haul!! Long road ahead, but I know she's gonna smash it! Conditioning for chemo starts tomorrow, settled to sleep like a champ. Now let's hope I get some sleep 😴

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  • Hickman line Operation

      2 May 2024
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    Maisyn had her Hickman line put in today under general anaesthetic and they also removed one of her ovaries to preserve it for the future should she choose to have children one day, as the chemo drugs are really strong. She's recovering well and is now having her second round of Enzyme replacement therapy. It's been a long day for all of us. Back in to hospital next week to start the chemo and we will be in hospital full time for 6-8 weeks. Still such a happy wee gal after everything 😍

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  • Maisyn's Cup

      30 April 2024
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    Just a quick update from the weekend. The Counties RC Club held a race meeting on Sunday in support of Maisyn. They donated all funds made on the day to help Maisyn. We are very grateful for all that they done on the day, fun was had by all and Maisyn really enjoyed her time down at the track. She loved watching the cars going around the track. The Nelson RC Club also raised funds at their race meeting on Sunday and donated on this page thank you so much for your generosity.

    There was also a sign made by Graeme McDougal which was auctioned off

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  • Butterfly Creek

      27 April 2024
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    Took the gal to Butterfly creek, she loves butterflies at the moment, but wasn't too sure about them in real life 🤣🤣 good day out with my little family 🥰 making the most of our days at home before being stuck in hospital

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  • Tuesday Update

      24 April 2024
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    First enzyme replacement therapy done! What a long, long day. Maisyn did so well!!

    We are coming back in to the hospital next week to meet with the Bone Marrow Transplant team to go over the ins and outs of the treatment and to see the ward etc and then also back in for them to put a central line in her chest/neck for the chemo and for any other meds/enzyme replacement therapy to go through while we're staying long term at the hospital. Then all going well she will start chemo the following week.

    It's all go go go and very overwhelming but super glad it's all being done quickly.

    Also, found out her donor match was found in Spain, how cool?!

    Rock on my little superstar ✨️ love you so much 🩷

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  • Monday update

      24 April 2024
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    Disappointing start to the week, we drove to the hospital bright and early this morning for Maisyns first Enzyme Replacement Therapy, only to get there and be told that the medication had not arrived at the hospital yet and no one had called me on Friday to let me know... so back in again tomorrow 🙄🙄 super frustrating. But it is what it is. Maisyns still happy as with not a care in the world 😂 💕

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  • First steps to treatment

      11 April 2024
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    Hello everyone, little update from us. Yesterday Maisyn had a cognitive assessment done, they advised us they don't normally do these assessments on kids as young as Maisyn so not too expect too much from it but they could get some sort of baseline from it to be able to assess her post transplant.

    Today we were back in the hospital bright and early, firstly for an ultrasound on her liver and spleen which are enlarged due to the syndrome, and then she underwent surgery to remove her tonsils and adenoids and to insert grommets. She is recovering very well, she is in PICU overnight just to monitor her breathing/oxygen and then will have another night on the ward tomorrow. She is doing great though, making everyone smile and laugh 🥰🥰

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