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

Alyssasmps1journey, Durban (2026)

09/05/2026

✨ MPS Awareness Day - Friday, 15 May ✨

Next Friday is MPS Awareness Day, a cause so close to our hearts. Our sunshine girl lives with MPS 1 / Hurler syndrome. There’s NO cure but with treatment we pray her symptoms will be lessened and her life extended!!

Shoutout to the amazing from who created this special design for anyone who’d like to print their own T-shirt and show support for our Warrior Princess! 👑 Since we don’t have enough time to get shirts printed and shipped, please feel free to save the design and print your own OR wear purple to stand with us! 💜🥹

With awareness, incredible things can happen in the rare disease community. Let’s honour every MPS warrior and make sure their stories are seen, heard and never forgotten. 🫶🏻💫

📸 Don’t forget to snap a pic and tag us!! 😍

RareDiseaseAwareness MPSWarrior WarriorPrincess GoPurple RareButReal RaiseAwareness HopeForMPS

04/05/2026

🌟 DAY +49 🌟

Grateful to still be allowed out of the ward for walks, it really makes such a difference. We had a lovely time in the park and a new favourite activity is running up and down the corridor on the ward. Ally made a sweet new friend: our neighbour who’s 6 months post-transplant and also living with a rare disease. 🥹🫶🏻

She’s now having her afternoon nap while getting a blood transfusion, which takes three hours. 🩸

We should have more to update tomorrow about the blood culture. It’s a bank holiday here in the UK, so everything is very quiet. xx 🙏🏼🥰

03/05/2026

Came across these videos that were taken less than two months ago, before transplant. It’s hard to look back sometimes 💔 my heart hurts thinking about how much my little girl has had to face. She’s been such a trooper through it all, but it doesn’t make it any less unfair.

Life looks different for us now. We’re isolating, doing constant bloods, waiting around for results. Her beautiful hair is gone and the steroids have made her so swollen… but even through all of it, she continues to shine in a way that inspires me every single day.

She’s even a pro at any medical equipment now, she knows exactly what to do. (Video 3 😉👩🏻‍⚕️🩺)

My Ally bug, I am so proud to be your mama. No words will ever be enough to describe how much happiness and love you bring into my life and into the world around you. Thank you for being exactly who you are - strong, sweet, silly, brave and full of sunshine. 🌞
I love you more than you’ll ever know x x x

02/05/2026

🌟 DAY +47 🌟

For those who missed our latest story: Ally’s Hickman lumens fell into the bath, so we came in Thursday night for bloods just to be safe. This morning we got that dreaded call, her blood culture came back POSITIVE 😭💔 so we were sent straight to A&E for admission. We’ll be here for at least the next 3 days while she gets IV antibiotics to clear the infection. 🙏🏼

As many of you know, I’ve always been a bit of a germ-phobe, but after Ally’s transplant and with her having no immune system right now, my anxiety has been on another level. Our little busy bee does not do “resting in bed.” She’d much rather be exploring the room, wiping every surface… including the floor… and then trying to taste the wipes afterward. 🫠😭 Send helppp 🫣🤮

Apart from being restless overnight and vomiting once this morning, she’s been absolutely fine since! They put us in the biggest room, so Ally has been zooming back and forth like a tiny tornado, keeping the nurses laughing with all her sass 💁🏻‍♀️ They’ve already started the antibiotics, so we’re praying they kick in fast.

We’re still waiting on donor results, please, please keep praying for 100% donor engraftment, for this infection to clear completely and for Ally to keep thriving the way she always does. 💜

Thank you all, as always, for the love, prayers and messages.

Wishing you all a beautiful weekend 🫶🏻🫶🏻🫶🏻

30/04/2026

🌟 DAY +45 🌟

Even though Ally is in strict isolation and we’re living our whole lives in one tiny little room .. eating, playing, sleeping, living out of bags and repeating the same routine everyday, we’re somehow finding our calm in the chaos. Some days feel endless and surreal and I’ll probably age 10years + but how lucky are we, really?

We have the best team of doctors and nurses. Our sweet Ally bug is doing so well and continues to amaze us every single day. We’ve got our special Gigi here, bringing comfort, strength and the kind of love only she can give. And an incredible community of support holding us up from near and far.

Even in this unusual bubble, life outside our door still feels full and bright. The sunshine keeps showing up for us and we’re only steps away from parks, trees, fresh air and little pockets of freedom that make everything feel lighter.

This isn’t the situation we imagined and goodness do we miss home and “normal life” so much. But there are so many hidden blessings. 🙌🏻💫

Choosing to see the good.
Choosing to keep a grateful heart.
Choosing to remember that even in the smallest spaces, life can still feel incredibly big.

One day at a time 🌈💜🌟

29/04/2026

🌟 DAY +44 🌟
WOOHOO! Our warrior princess keeps shining 🤩💫

Clinic day today… 🏥 Her doctors are thrilled! She’s looking incredible and her blood counts are just as amazing! We’re still waiting on her chimerism results to see what % is donor (you can imagine the anxiety on waiting for tests but please pray with us for 100% donor! 🤞🏻) Overall things are looking so good. Honestly, the strength and resilience from our little bug is truly unmatched 😍👏🏼

We thought she might need a platelet transfusion today since platelets are usually the last to recover… but guess what? Our girl is making her OWN platelets! 🎉🙌🏻 Her hemoglobin was a little low but the doctor wasn’t worried at all especially since she’s still bursting with energy, cheeky giggles and that sassy sparkle we love so much. ✨😄 Her immune numbers are excellent and she’s being weaned off one of her steroids, which should help with the swelling in her face, neck and tummy.
Every little step forward feels huge. 💪🏼 🌼

It was also such a blessing this morning to meet two other beautiful girls with MPS1 and their amazing families. There’s something incredibly comforting about talking to people who truly get it, the emotions, the fears, the victories. 💜 Sharing stories, swapping little tips and just being able to say “me too” without needing to explain… 🥹

The hardest part right now is that Ally is such a social little bunny 🐰 and wants to play with every child she sees. She doesn’t understand why playgrounds and playdates aren’t safe for her just yet. But we’re so grateful for the beautiful open parks where she can run freely, laugh and burn off that endless energy 🌳

We still have a long journey ahead but we’re taking it one day at a time and today, our hearts are feeling so grateful. 🥰 Your prayers, messages and support never go unnoticed! Thank you for lifting our girl up and standing with us through every step. 🙏🏼💜

Outfit of the day: a big thank you to our very special .wessels95 for the most thoughtful care package and the CUTEST outfit! 💖✨ So loved playing dress up again and our girl absolutely rocked it! Crocs and all 😜💕🌸

22/04/2026

🌟 DAY +36 🌟

✨🔔 SHE RANG THE BELL! 🔔✨

Our warrior girl giggled her way through (literally 😂😍) one of our happiest moments… Ally officially rang the end of treatment bell and we’ve been DISCHARGED from hospital and moved into the charity house. 🥹🌈❤️‍🩹

I’m still trying to wrap my head around it all. This journey has been the hardest, longest, scariest mountain we’ve ever climbed… and our beautiful girl has faced every single step with the biggest smile and the purest strength!! Ally, my darling girl, you are the strongest, bravest, most beautiful girl I know. To be your mama is the greatest privilege 🥹 Every time I said “I can’t do this”, you showed me that we could.. and we did just that! 💜✨

We still have a long road ahead.. strict isolation, weekly clinics, mountains of meds but today is a HUGE milestone. 🤩 The first 100 days are the most crucial… and now we get to face them outside of the ward while her body continues to heal and allow her body to accept the new bone marrow. A little taste of freedom, a lot of new emotions and yes… a Mama who’s even more paranoid of GERMS (if you know, you know! Send help!!) 😅🫣😂
And the med schedule? It is SO overwhelming, all the different times, different doses… we basically plan our entire day around medicine! 😑🫠🫨
But mostly? Proud. So, SO proud!!! 🌼

To the incredible team of doctors and nurses at Royal Manchester Children’s Hospital… thank you will never be enough. You held us together on the days we felt like crumbling. Thank you for the endless cups of tea, the snacks, the comfort, the laughter, the patience, the calm, the way you loved Ally like your own and made us feel so at home. Leaving today gave me a lump in my throat… a reminder of how special you all are. 🥰🙏🏼

And to everyone who checks in, supports us, sends love, prayers, messages - THANK YOU!! You’ve carried us more than you know. 😍💫

Here’s to the next chapter.
To healing. To strength. To hope.

❤️‍🔥❤️‍🔥 GROW CELLS, GROW ❤️‍🔥❤️‍🔥

19/04/2026

HAPPY SUNDAY from a happy mama & our little Ally bug who absolutely loves their time off the ward for some fresh air and a walk! 🤭🤸‍♀️☀️

Most of you have been keeping up with our updates on social media but we’ve had a few people reaching out to ask how they can help and whether we are still in need of support.

The honest answer is yes, please… if you are able to. 🥹🙏🏼
Travelling to another country for medical treatment has brought our expenses to an all time high. We took a loan to get here but also daily costs like food, nappies, formula, laundry, transport and basic necessities along with still keeping up with our bills back home that all add up so quickly! Ally and I are in the UK on our own while Trysten works in SA to keep everything going and every bit of help truly makes such a difference. 🫶🏻💫

We’re still in the very early and most crucial stage, the first 100 days after transplant and doctors expect we’ll need to remain here for around +-six months. It’s a long, emotional and expensive journey but we’re doing absolutely everything we can to give Ally her best possible chance. ❤️‍🩹✨

To each and every one of you who check in, keep us in prayer and send good vibes our way - thank you!! It means the world to us. We see it, we feel it and we appreciate you more than words can say. 💜🌟
You are and always will be, an incredibly important part of Ally’s journey. 🤗🥰

🌻 Bank details:

🇿🇦 : Alyssa C Aldworth
FNB Cheque Account
Account : 63172498909
Branch : 229826
Swift Code : FIRNZAJJ

🇬🇧 : Jade Aldworth
Monzo Account
Sort code : 04-00-05
Account number : 22680331

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

🌻 IG: https://www.instagram.com/alyssasmps1journey?igsh=MXY2MG4zbXQ2Z3pmcw==

🌻 FB: https://www.facebook.com/share/15rqry3pEb/?mibextid=wwXIfr

🌻 LT: https://linktr.ee/alyssamps1?utm_source=linktree_profile_share<sid=9c43dc1a-d75f-431b-bd20-e08dac6b46aa

16/04/2026

🌟 DAY +30 🌟

One whole month since transplant and what a milestone it is! Our beautiful warrior princess is nothing short of incredible 🥹🌈✨

Although today was an emotional start as we said goodbye to Dada… we’re going to miss him so much 💔 Grateful for all the love, support and strength he brings us! ❤️‍🩹

Ally had her post-transplant Rituximab infusion today, a long 6.5hour treatment that “calms” part of the immune system to help protect her new cells and reduce the risk of GVHD.

She’s also needed a blood and platelet transfusion, which is all part of this stage of recovery and completely expected after transplant. Even though it means lots of time in bed with drips and monitors, she handled it like a true champion 👑💉🩸

She’s got a bit of extra fluid from the transfusions and the steroids she has daily give her a puffy little face and tummy 🥹 - she’ll be on those for at least six months! 🫣

Miss madam helped herself to her first ever sweet and absolutely LOVED it… Mom and Dad’s sweet tooth strikes again 🤭😂😆 Since transplant she’s become the biggest fan of anything prawn-flavoured 🤪😆 Chemo wipes out their taste buds, so salty foods are usually the winners after transplant 🍤 Buuuut!! She’s even enjoying a few bites of meat again - YAY! 🥳 She’s unfortunately still not allowed biltong just yet 🥲🇿🇦 but we’re so grateful for how well she’s eating and drinking.

One month down and so much strength behind her.
One day closer to normal 🏡✨

Just so proud to be your mama my Ally bug 😍🫶🏻

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

Alyssasmps1journey

09/05/2026

04/05/2026

03/05/2026

02/05/2026

30/04/2026

29/04/2026

22/04/2026

19/04/2026

16/04/2026

28/11/2025

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