Alyssasmps1journey

Alyssasmps1journey 💟 Diagnosed at 7 months with MPS I (Hurler Syndrome)
🇿🇦 Durban, South Africa
🎗️Raising awareness & hope

Today we had the MOST ridiculously special package delivered to our hospital door… all the way from South Africa by the ...
10/04/2026

Today we had the MOST ridiculously special package delivered to our hospital door… all the way from South Africa by the incredible .c 🥹😭😍

WOW. Just… WOW. Where are the tissues?!

Our darling … you’ve been our rock from day one. Always checking in, always lifting us up and finding every possible way to make us feel so loved and supported. And THIS care package?! You completely outdid yourself 🇿🇦✨

The yummiest SA treats (which Ally got stuck into with zero hesitation 😂🤪), the cutest little hospital toys and love in every single detail.

And then… the video.
The most heart-melting, gentle, comforting message from the amazing 😍❤️‍🩹 .esterhuizen_

We’ve watched it a million times, cried happy tears and felt our hearts stretch three sizes. Thank you for giving us smiles in a moment we really needed it 🌈 You’ve officially won the heart of the tiniest, cutest super-fan 🖤🤍🦈

Our hearts are bursting.
“Thank you” will never feel big enough 🤍✨

08/04/2026

🌟 DAY +23 🌟

Our sunshine girl just keeps proving what a little warrior she is! 🥹✨ Ally has been absolutely smashing it.. eating, drinking and taking her meds like a total superstar. She’s even been weaned off her pain meds and because she’s taking everything orally now, she gets a few hours each day line-free. And she uses that freedom exactly how you’d imagine… by running laps around the room like the tiny tornado she is! 💜💨 & taking selfies on mama’s phone! 🤪🤳

Her neutrophils are up to 0.93 🎉 Cord blood takes a little longer to wake up and get to work, but these magical cells are finally joining the party. 🥳🎊😍 Watching and waiting each day is an emotional marathon, but seeing those numbers rise gives us so much hope. Please keep praying for gentle, steady growth and a smooth path to 100% engraftment. 🤞🏼✨

She’s needed more platelets and a blood transfusion and each time it gives her that extra little boost, more colour, more energy and more sparkle. 🩸

And the blood pressure checks… oh boy. She still hates them with her entire being 😩😂 She gets so angry that she actually goes to find her dummy just so she can throw it in protest. It’s dramatic, adorable and heartbreaking all at once 🥹

The only bump in the road right now is her tummy - poor little bug gets bursts of pain that make her jump up and down and cry 💔, but thankfully it’s not all day. Doctors are watching closely and think it’s just mucositis being its annoying self. We’re cuddling through it, distracting through it and celebrating every calmer moment. 🤗

And Mama? Mama is not allowed to leave Ally’s sight. If she’s distracted and I even think about sneaking out of the room, she smells I’m gone and screams until I return 🥹🫣❤️‍🩹

Thank you to everyone who has wrapped us in prayers, love, messages and the sweetest gifts. Every bit of kindness lifts us more than you know. 🫶🏻

Our girl is fighting. She’s healing. She’s shining.
And we’re taking it one gentle day at a time. 💪🏼💜✨

🌟 DAY +15 🌟Another day of courage, another day of waiting, another day our warrior princess shows us what true strength ...
31/03/2026

🌟 DAY +15 🌟

Another day of courage, another day of waiting, another day our warrior princess shows us what true strength looks like. 🥹

It’s been 25 days inside these hospital walls. 25 days without fresh air, without “normal” and yet every single day she continues to amaze us with her resilience, her sweetness and that incredible smile that somehow finds a way to shine, even in the hardest moments.

The doctors and nurses constantly tell us how special and strong she is… how she brightens their rounds, how her little personality warms their hearts. And as her parents, we couldn’t agree more. She is pure magic 😍🌟

Please keep praying & sending all the positive vibes:
💜 For her new cells to grow strong, fast and steady
💜 For full engraftment, 100% donor cells taking over
💜 For gentle days ahead with as few side effects as possible
💜 For protection from infection while her immune system rebuilds
💜 For comfort and courage for our sweet Baby Ally
💜 And for wisdom and strength for the incredible team caring for her

This is a long road but every day brings us a step closer to healing, hope and home. Thank you for surrounding our girl with so much love. She feels it… and so do we! 🤗🥰

###

🌟 Day +13 🌟Our hearts are so full because… ❤️😍 DADDY’S HERE! 😍❤️
29/03/2026

🌟 Day +13 🌟
Our hearts are so full because…
❤️😍 DADDY’S HERE! 😍❤️

✨ Bald, brave and absolutely PRICEless 😉💪🏼❤️‍🩹Today we’re crying all over again… Uncle Dale shaved his head for our Ally...
26/03/2026

✨ Bald, brave and absolutely PRICEless 😉💪🏼❤️‍🩹

Today we’re crying all over again… Uncle Dale shaved his head for our Ally bug. No questions, no hesitation, just pure love! 😭💜

We hit the jackpot with our Price besties .. always showing up before we even know we need them, in the most beautiful ways!! ❤️‍🩹

Bald has never looked so brave, so loyal and so, so cool. 🥹❤️‍🔥 Thank you for showing our girl she will never walk this road alone.

We love you two + our mini bestie more than words could ever say 🌈💜

🌟 DAY +6 🌟We’re still in the thick of it. Ally has been dealing with some serious fluid overload, which meant oxygen, ve...
22/03/2026

🌟 DAY +6 🌟

We’re still in the thick of it. Ally has been dealing with some serious fluid overload, which meant oxygen, very puffy eyes that she could barely open and a tummy that looked like a balloon ❤️‍🩹 as well as mucositis. Yesterday all she wanted was to lie on mama and dare I even think about moving her! 😅 If a nurse came near her, she let the whole ward know how she felt about it 🙈

But at 1am, we decided to increase her pain meds, and what a difference it made. She finally settled and she’s also on diuretics which helped with the swelling too. She’s still very sleepy, resting a lot, but overall today is looking brighter than yesterday. ✨ She ate a croissant for breakfast- first time eating in 2 days!! 🥹👏🏼

Her neutrophils are at 0.16. GROW CELLS, GROW!!! 💜🌈 We’re one step closer and I couldn’t be prouder to be this girl’s mama. My sweet Ally bug, you honestly amaze me every single day. 💜✨

2am moment: the only thing that got a smile out of her was mama laughing 😜😍

Here’s to gentle steps forward, healing and more smiles to come. 💜🌈✨

🌟 DAY +4 🌟Our brave girl has had some really tough days. From being our little wild child who hated staying in bed, to b...
20/03/2026

🌟 DAY +4 🌟
Our brave girl has had some really tough days. From being our little wild child who hated staying in bed, to barely being able to keep her eyes open or sit up, she slept the whole of yesterday. 💔

Ally broke out in the most horrific, itchy rash and has been battling a fever between 38.8 - 41.4°C that we just couldn’t seem to break, along with a very fast heart rate (180–200). They say it’s all connected to the fever but it’s still so scary to see. We also had a huge fright with a possible bacterial infection in her blood, but thankfully the second test came back negative so they assume the first one was a false positive.

She’s on three different antibiotics 🥹, plus more meds than I can count. She’s started drooling and woke up crying while pulling at her mouth, so they think mucositis has begun. We’ve asked for oxycodone (similar to morphine) because you can see she’s in pain and all we want is for her to be comfortable. To give her mouth a chance to rest and heal, they’ll now be feeding her through her line, which should make things a little easier for her. 🙏🏼

Today I noticed little pieces of her hair on her pillow… and my heart just isn’t ready for this part. 🥹💔 For the first time ever, we didn’t get a single smile from her. We knew these days were coming but seeing your baby so unwell is just heartbreaking! 😭

But we know this is part of her path to healing. Our biggest hope right now is for quick, smooth, 100% engraftment with only the mildest side effects so she can start feeling like herself again. 💜

** Day 4 🌟: This morning she’s finally been rash & fever free and she had a blood transfusion which the nurses say might help her perk up. I managed to get a couple of little smiles, but you can still see how much pain she’s in. Even her cry sounds different. 🥹🥲 **

Please keep sending your prayers, love and good vibes. We feel them and she needs them. ❤️‍🩹
Our beautiful warrior princess. Better days are coming. ❤️‍🩹✨

16 March, 2026: DAY 0!!! GROW CELLS, GROW!!! ❤️‍🩹❤️‍🩹❤️‍🩹Today our brave girl officially received her new magical cells ...
16/03/2026

16 March, 2026: DAY 0!!!
GROW CELLS, GROW!!! ❤️‍🩹❤️‍🩹❤️‍🩹
Today our brave girl officially received her new magical cells and it took just 20 minutes for them to make their grand entrance but those 20 minutes held every wish we’ve ever made. 🌈🙏🏼💜

Now we start the 100 day countdown, the season of waiting and watching as these new cells find their home. Over the next 10-14 days they’ll start producing new blood cells which is the engraftment stage. It’s a really tough time and Ally will feel pretty awful until her counts rise, so please keep those prayers and good vibes coming.

Also… the sweetcorn smell has made its grand entrance too 🤣🌽 If you’ve ever wondered what a life-saving treatment smells like, apparently it’s corn!! It’s from the preservative used for the stem cells and honestly, we’ll take all the corn-scented miracles we can get!! 😜

To every single person praying, texting, messaging, commenting, sharing and wearing purple: we feel you. 💜 Your love surrounds us in ways words can’t. Even if I haven’t responded, please know your support is carrying us. 🫶🏻

Please keep those prayers going.. for gentle days ahead, for minimal side effects, for 100% engraftment and for the incredible team of doctors and nurses guiding us through this journey. 🙏🏼💜

We love you all ###

Day -1: Ally has been put on more antibiotics for her ERT “fever”. It’s really upset me, mostly because of the upset tum...
15/03/2026

Day -1: Ally has been put on more antibiotics for her ERT “fever”. It’s really upset me, mostly because of the upset tummy and the nappy rash that always follows, on top of the chemo effects still ahead. 💔 She’s only just recovered from the ATG antibiotics that were given last week 😭

But today is also a REST DAY, which means snacks, playtime and Ally being unbearably cute ✨
smallest and CUTEST fan 😍😍😍

Tomorrow is the big day, TRANSPLANT DAY! 🦋🌈💜

I’m feeling all the emotions, but mostly hopeful and so ready. 💪🏼 Don’t forget to wear purple to send ALL the love, strength and good energy our way. ###

Day -3 💜If you’re happy and you know it… clap your hands! 👏🏼Because our girl is this close to the finish line of all her...
13/03/2026

Day -3 💜

If you’re happy and you know it… clap your hands! 👏🏼
Because our girl is this close to the finish line of all her dreadful immunosuppressants! Today is Ally’s last day of chemo and tonight at midnight will be her last night chemo. 👏🏼😍🙏🏼

She is doing so, so well. Truly the strongest little warrior princess. She keeps us on our toes with her cheekiness and absolutely adores anyone who comes to say hello (as long as they’re not trying to take her BP or changing her Hickman line dressing). She blows them dozens of kisses when they leave. ❤️‍🩹

Tomorrow she’ll have her ERT and we’re praying for the smoothest day possible with NO fevers and no reactions because this poor girl needs a break from antibiotics. 🤞🏻

Sunday will be a much needed rest day…
because MONDAY is coming…

🌈🤩🦋✨ TRANSPLANT DAY ✨🦋🤩🌈
The day she receives her magical donor cells.
The beginning of a brand new chapter where her little body can rebuild, renew and grow stronger than ever.

We’ve been “warned” that the first couple of weeks after transplant will likely be the hardest. Her neutrophils will drop to zero, exactly what we want because it’s showing her old marrow is gone and her donor’s cells are ready to grow. But it also means she’ll feel pretty awful and this is when the tougher chemo side effects often appear: no immunity, fatigue, nausea/vomiting, poor appetite, mouth sores (mucositis), skin sensitivity, hair loss 💔💔💔 ..

Please keep our sweet girl in your prayers:
💜 That her donor cells engraft gently
💜 That her body accepts them fully and peacefully
💜 That side effects remain as mild as possible
💜 That infections stay far, far away
💜 And that her incredible medical team continues guiding her safely every step of the way

If you’d like to show Ally some love, please wear PURPLE on Monday to stand with our bravest girl. 💜

Thank you for every message, prayer and bit of love you’ve sent our way. We feel it all and it truly carries us. ###

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Durban

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