Alyssasmps1journey

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South Africa
Durban
Alyssasmps1journey

💟 Diagnosed at 7 months with MPS I (Hurler Syndrome)
🇿🇦 Durban, South Africa
🎗️Raising awareness & hope

13/02/2026

Update 💜

Yesterday we went in for our first ERT in the UK, and it’s ended with us being admitted into hospital 🥹 Ally spiked what seemed to be her usual ERT fever however she did require a few minutes of oxygen this time round for support 🫣 Because she has a port, UK protocol means any fever requires admission and IV antibiotics to rule out infection.

They had trouble accessing her port during the night so at 01:30 this morning we were sent for an X-ray to check placement. Ally sat like a champ and even smiled for her “photo” 😆 Thankfully, no issues with placement so they’ve given medication to unclog the line which seems to of worked wonders! It’s been a bit chaotic as we definitely weren’t prepared for a hospital stay but we’re rolling with the punches & so damn grateful for our one in a million, Chanty!!! 💜 The nurses have been so accommodating and caring which makes it easier 🥰

We honestly thought we’d be discharged this morning since we’re so used to these fevers… but she spiked a temperature again this morning (38°C), and her blood results are suggesting there may be an infection, so we’re staying at least another night for observation and to do some more bloods. 😭

We have met with her transplant Doctor, finally! Obviously nothing can prepare you for the journey we about to face but I feel happy and confident with him. The next step is that on the 23 Feb, Ally will be admitted again to have her port removed and a Hickman line placed, which means she’ll be put to sleep…Does this ever get easier?! 🥹❤️‍🩹

From there, the transplant process starts… 🏥

• Admission on 5th March to prepare for transplant
• Chemo starts 6th March for 10 days to completely wipe out her immune system 💔
• Transplant day (new magical enzyme cells!) on 16th March 🌈

Despite all of this, Ally of course is her usual happy, friendly, loving, cheeky, brave self. SO proud to be your mama 🥰😘

Thank you so much for all the love, prayers and messages. We see them all and appreciate every single one. I’m just so sorry if I can’t reply to everyone personally right now ###

09/02/2026

Just a girl on a mission to the local library 😍📚

Sorry we’ve been a little quiet, it’s mostly because there isn’t much to update yet. We’re finally meeting the transplant doctor this week and are hopefully getting a walk around the hospital where we’ll be staying for the next few months. We’re also really hopeful she’ll be able to start ERT while we wait for transplant, which feels like a positive step forward. 🤞🏻

Last week Ally got through a day of prep like a champ.. Metabolic Doctor, full set of bloods, an echo scan, and a visit with the dietitian (because of course we don’t get her formula and nappies here 🙃) but all important steps as we prepare for transplant.

All in all, we’re doing well. A bit tired, definitely cold 🥶🤣 but staying positive and taking each day as it comes.

We’re beyond grateful for our family here in the UK for opening up their home to us, Ally and I sure feel at home with all the extra cuddles, home cooked meals & Chanty’s Uber 😍🚗 and to all of you for the incredible love, support, prayers, and encouragement we’ve been surrounded with.
Feeling very thankful 💜 and missing Dada very, very much! ❤️‍🩹

29/01/2026

Update 💜

After a week of absolute chaos: the visa arrived on Wednesday, flights were booked on Saturday, and Ally and I left South Africa on Tuesday night. Trysten will join us once she starts chemo 🤍

Despite everything (and somehow not TOO much extra luggage… if you know me, you know 😂🫣), we made it onto the flight and have landed safely in England 🇬🇧

This little girl though… an absolute ANGEL. First flight ever, not a single tear, greeting everyone like a mini air hostess and sleeping better than she does at home! Feeling so, so lucky to be your mama, my Ally bug. 🥰

We have an appointment at the hospital next week Tuesday and are hoping to have a transplant update to share then 🤞✨

Thank you for all the love, prayers, and support. While we find our feet and settle down here in the UK, I’ll be sharing updates on social media, as I’m not able to message everyone personally, even though I wish I could.
Thank you so much for understanding ❤️‍🩹
Lots and lots of love from us ###

26/01/2026

📢 LAST DAY TO ENTER !!!! 😍😍😍

You could WIN a luxury 3 night, all-inclusive houseboat getaway on the stunning The Shamwari Houseboat for you and 5 friends 🎣🛥 while helping Ally get the urgent treatment she needs ❤️‍🩹
✨ Valued at R96,000! ✨

💜 HOW TO ENTER
1️⃣ Donate R500 via BackaBuddy
2️⃣ Use FULL NAME + as your reference
🔗 https://www.backabuddy.co.za/campaign/our-only-hope-lies-across-the-ocean

❗ NOT INCLUDED

✈️ Flights or transport to/from Namibia
🚤 Road or boat transfers between Katima Mulilo / Ngoma and the houseboat
🍹 Premium imported drinks & gratuities

If you can’t enter, please share 🙏🏼

✨ So thankful for the love surrounding Ally and our family 💜

22/01/2026

After waiting so patiently since May 2024, everything has suddenly started happening all at once and so fast we can barely catch our breath. 😭🙏🏼

✨ OUR UK VISA HAS BEEN APPROVED!! ✨

We are beyond grateful, overwhelmed, excited… and honestly a little terrified too. This journey has already asked so much of us, and while this next step brings so much hope, it also comes with a lot of unknowns.

Our hospital here has truly become our home away from home. The doctors, nurses, and staff have cared for Ally (and me) with so much love week after week, they are our family. Saying goodbye to a place that has held us through so much is incredibly emotional, and the thought of starting over somewhere else, in a different country, is daunting. 🥹

Doctor Ramadu & Netcare Umhlanga, we will forever be thankful, 7 months of seeing you weekly 🤪❤️‍🩹

At the same time, we are heading to the UK, where there is a doctor experienced in MPS transplants, and we’ve already made the most special friendships with other MPS families there. We cannot wait to finally meet you all in person. 🤗

For those who haven’t heard all the details yet:

Ally is going to have a bone marrow transplant.

This means very strong chemo 💔, immunosuppressants, and months of intense treatment, recovery, and isolation. It is not a cure, but it is the best treatment option for MPS1 and gives her the greatest chance at a better quality of life.

The reason for transplant is to replace her cells with ones that can produce the enzyme her body is missing. This means she will no longer need weekly enzyme replacement therapy, and that alone feels like a massive weight lifted, both for Ally and for us. 🙏🏼🫶🏻

While Ally hasn’t found a perfect donor match, she does have a 9/10 match and a 7/8 cord blood match, which the doctors are happy with, and we are incredibly grateful for that. 💜

The weekly hospital visits, ongoing treatments, and financial strain have been so hard on our little family. 🥹 Finding R92,000 every single month for ERT, while also trying to save enough to get Ally to the UK, became completely impossible. We made the decision to take out a loan and this is what has made this UK trip possible.

We have not yet reached our BackaBuddy target, and we are still carrying a huge financial load. If you are able to contribute in any way, we would be forever grateful. And to everyone who has already donated, shared, prayed, or supported us - thank you so much! Your kindness has carried us more than you know. 🫶🏻🙏🏼
🔗: https://www.backabuddy.co.za/campaign/our-only-hope-lies-across-the-ocean

We don’t have a confirmed transplant date just yet. Now that the visa is approved, the UK hospital will begin the process, and things should hopefully start moving quickly. We’ll keep everyone updated as plans fall into place.

This next chapter is big, scary, exhausting but it is also filled with hope, and that’s what we’re holding onto tightly. ❤️‍🩹

16/12/2025

I scream, you scream, we all scream… for Ally’s first ice cream! 😋🍓🍍

10/12/2025

GRATITUDE POST 💜💜❤️‍🩹❤️‍🩹

There are moments in life when you stop, look around, and realise just how many truly incredible people are standing behind you .. lifting you up, cheering you on, sharing your story, and pouring SO much love into your family when you need it most. This is one of those moments for us. 💜✨

To every single person who has shown up for our Ally bug… thank you.
Truly, deeply… THANK YOU! 💜🌈

Here’s just a glimpse of some of the magic you’ve created:

⛳️ 24 teams (96 players) showing up at our golf day
🤝 Our incredible sponsors who went above and beyond
🏃‍♀️ A fun run, 🎨 Sip & Paint, and 🎱 Bingo night
🎤 Presentations at work
📱 300 for 300 WhatsApp group
🎁 People donating their birthday/wedding gift money
🧁 Cake sales and donor drives
💉 And our village who raised enough for Ally to receive 21 infusions! 💪💜

And then there are those whose acts are quieter but just as powerful…

💜 Those who share our story
💜 Those who spread awareness
💜 Those who donate what they can
💜 Those who check in, pray, hope, and hold us in their hearts

Every single one of you matters. Every gesture counts. Every bit of love is felt.
We see it. We feel it. We carry it with us every single day. 🌟

Words will never be enough to express what this means to us because you haven’t just helped financially. You’ve given us strength, hope, and a beautiful reminder that the world is still full of kindness, compassion, and humanity. 🌍💜

From the deepest part of our hearts…
Thank you. Thank you. Thank you!!! 🥹❤️‍🩹

With endless love and gratitude
The Aldworth’s 💜💜

28/11/2025

She heard the news… and broke into her thank you dance!
R38,000 raised in just two days.
You are all part of her miracle.
Every share. Every prayer. Every donation is helping save our Ally bugs life.
We see your kindness. We feel your love.
💜👶🏻🌈

https://www.backabuddy.co.za/campaign/our-only-hope-lies-across-the-ocean

Address

Durban

Website

https://www.backabuddy.co.za/campaign/help-baby-alyssa-thrive-urgent-mps1-treatment?fbclid=PAQ0xDSwKivaFleHRuA2FlbQIxMQA

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