Alyssasmps1journey

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South Africa
Durban
Alyssasmps1journey

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

22/10/2026

Update:
Unfortunately, Ally’s blood results weren’t what we were hoping for. 🥹❤️‍🩹 Her platelets and neutrophils have dropped quite a bit, which is, of course, worrying.

The good news is that her doctor is feeling positive and believes we can get things moving in the right direction with a weekly injection. 🙏🏼🥹 We’re keeping our fingers crossed that this is exactly what our girl needs and that we’ll start seeing those numbers climb again! ⬆️❤️‍🩹 Poor baby girl having to be poked and prodded. 😭 I feel so bad for her! I hate injections myself, so holding her through it is just the worst. 😢

On a positive note, she’s making lots of red blood cells and her myeloid chimerism is still considered fully donor. 🙏🏼 We’re holding onto those positives and trusting that this is just another little bump in the road.

Please pray that the injections do their job, her numbers start climbing and her little body continues to heal and grow stronger. 🌟💫✨

19/10/2026

🌟 DAY +217 🌟

Sorry we’ve been a little quiet lately. 🥹 I’ve been struggling with stress and anxiety. I recently panicked over a chimerism report, only to discover there had been a misunderstanding. I still find it confusing, but it sent me over the edge and made me realise just how much these damn numbers are affecting me.

Being in the transplant world, you become consumed by blood results, googling everything, analysing every little change and worrying about things completely out of your control. It’s exhausting. ❤️‍🩹

Seven-plus months of isolation is HARD. You carry so much guilt because your toddler’s world is so restricted, yet you’re absolutely petrified of germs. You want her to play, explore and just be a little girl, but you’re terrified of putting her at risk. It’s such a difficult balance. 💔

We’re desperate to book our tickets home, but we’re still waiting for the go ahead while we see Ally’s blood counts stabilize. As much as we want to be home, we have to trust the process and the incredible team looking after our girl. We came to the UK for a reason. ❤️‍🩹🏠

And Ally? Oh, our darling angel girl! 🥹😍🫶🏻

She is INCREDIBLE! Full of energy, happiness and the cheekiest little personality. Her smile and infectious laugh light up every room and if you didn’t know her story, you’d never imagine everything she’s been through. Oh, and the hair! 🤪😍✨ We are SO proud of her! 💜

She’s currently being weaned off her steroids and immunosuppressant, another step forward in her recovery! 😍 We’re praying her blood counts stabilize and those numbers start climbing up!! 🙏🏼

Thank you for loving, supporting and praying for our little family. 💜 We would really appreciate your continued prayers that Ally’s blood counts stabilize and start climbing UP, UP, UP, her chimerism remains at 100% donor and that her body continues producing more than enough of the enzyme she needs to thrive. 🥰🙏🏼❤️‍🩹

As the incredible families who’ve walked this road before us have reminded us…
TRANSPLANT IS A MARATHON, NOT A SPRINT. 👏🏻💜

07/10/2026

The strength, bravery and resilience you’ve shown through everything you’ve been through is something I’ll never stop being in awe of. ❤️‍🩹

Watching you go through things that no child should ever have to go through, yet still smile, laugh and carry on being our happiest, most loving little angel… 🥹😭

You are truly incredible, my darling. I’m so proud to be your mama and I feel so incredibly lucky that I get to call you mine. 💎

02/10/2026

Our little princess got her hearing aids!! 💗🦻🏻🎀 (if you can see past this hair growth 🙊😍)

We unfortunately didn’t get the glitter ones we had wanted for some reason, but these little pink ones are still so cute! 💕 The green string is for her to wear in the beginning so we don’t lose them, because they are very expensive. 😅😂

She has completely surprised us all! 🥹👏🏻 She’s worn them with absolutely NO issues at all (it’s been 3 days 🤞🏻) and not even a single tear during our appointment. I can’t believe it! 😭❤️‍🩹 I’m definitely not as pro at putting them in yet 😂 but I’m sure I’ll get there!

How crazy is the difference between her hearing tests with and without her hearing aids?! 🫶🏻 Hopefully this means some new words will be coming our way soon! 🥹💕 Whenever she’s ready, of course. For now, she’s happily babbling away and having full-on toddler conversations, complete with hand gestures, dramatic expressions and the cutest little eye blinks. 😆😂 She really is such a character! 👑

We are SO, so proud of our incredible little girl and the way she continues to take everything that comes her way in her stride. 😍❤️‍🩹 She amazes us every single day!!! 🌟

Her bloods yesterday were also positive! 🥳 We’re slowly weaning down another tiny dose of steroids, so please continue to pray that her numbers keep rising and that her little body continues to work its magic. 🙏🏻❤️‍🩹

22/09/2026

Funcle has arrived!! 🥳🤩❤️‍🩹

It took a few hours, but I think Mama has officially been replaced! 😂🙈 Gordon has always been one of Ally’s absolute favourite humans, so she is VERY happy to have her Funcle here! 🥰

Yay, yay, yay!! Happiest heart! 🇿🇦🇬🇧✨

Ally’s bloods had already improved yesterday from Wednesday, so we’re thinking, hoping and praying it may have been a reaction to one of her meds. She’s still on steroids for now and we’ll see how her next bloods are. 🩸🤞🏼

Up, up, up we go!!! 📈🥹💜

17/09/2026

2 going on 12? 😂🥹💜

Miss Madam has decided she can give herself her own meds! She makes them look absolutely delicious… meanwhile, they are HORRIBLE tasting 😂🤢 But she is such a little superstar with her meds and has been throughout this whole journey. 🥹🌟

Yesterday was 6 MONTHS POST TRANSPLANT!! 🎉❤️‍🩹
Day +185!! We spent the morning in day clinic getting Ally’s second immunoglobulin infusion! 💉

They do regular blood pressure checks and observations throughout and she took them all like an absolute champ! 🌟 She even stayed happily in bed the whole time, with no fuss at all! 🥰

Six months of fighting, growing, healing and showing us just how incredibly strong you are. We are SO unbelievably proud of you. 🥹 You’ve been through so much in your little life and yet you’re still the happiest, most loving little soul. 🥰 Keep fighting, keep smiling, keep spreading love & joy and keep showing us what you’re made of. We love you more than words could ever say. 🥹🐞❤️

Our update isn’t quite the smooth sailing we were hoping for and I’m not really sure what to update other than her blood counts are a little “dodgy” again and her neutrophils have dropped, which is obviously stressful for us. The good news is that the doctors are still feeling positive because she is producing red blood cells, which is reassuring. They now think the MMF could be contributing to the drop in her counts, so we’ve stopped that for now and will see how her bloods look next week. 🙂

We’re so grateful to be in the best possible place, with the best team looking after our girl, but if we’re being honest… we’re just SO ready for some boring, smooth sailing now. PLEASE !! 😂🙏🏼

10/09/2026

It’s our princess’s BIRTHDAY MONTH!!! 🎀👑🥳💜
HOW is my baby turning TWO?! 🥹😭

Steroid snacks and bloat are still going strong. 😜🥐 This girl does NOT stop eating and I feel like I have a newborn again with the amount of bottles needed during the night! 🥹🍼 But it’s not her fault, and these steroids are so harsh on their little bodies. She can have as many bottles as she needs. ❤️‍🩹🍼💕

I’ve just realised all her clothes are still 12–18 months (the age she was when we arrived 🫣)… whoops! 😳 These past 7 months have absolutely flown by. I can’t believe it!

NEXT WEEK IS 6 MONTHS POST-TRANSPLANT!!! 🥹❤️‍🩹 And we’ve FINALLY been able to stop one of her medications! We celebrate every small win because they’re, in fact, BIG wins! 🥳🥳 Bye-bye, Posaconazole! 👋🏼😂💜

We’re taking things one day at a time. Her numbers have dropped a little from last week, but the doctors aren’t concerned and are happy with both her numbers and how she looks. They’re weaning her off the steroids, so hopefully that’s the reason for the dip. Now we just need those little cells to keep growing! 🤞🏼✨

Monday is another day clinic for her next IVIG infusion. 💉 I think it’s roughly 6hours because they have to gradually increase the rate, so basically… pack the snacks and entertainment! 😂🍿 Another Ally day-clinic marathon! 💜

We’ve also been told Ally has moderate-severe hearing loss and will need hearing aids. 🥹❤️‍🩹 Her pretty pink, sparkly princess hearing aids have been ordered and will be fitted on the 30th! 🎀✨🎧💕

We couldn’t be prouder of our little warrior. 👑✨

02/09/2026

🌟 UPDATE 🌟

Ally’s numbers continue to look very promising!! 🤞🏻🤞🏻🙏🏼 The anxiety that comes with these clinic days is something else 🤭 but thankfully, her doctors are very happy with how things are looking.

She’s now being weaned off the steroids, with her dose being reduced by half. We’re hoping, praying and keeping absolutely everything crossed that her numbers stay up, her magic cells keep growing and she continues to thrive. 🙏🏼✨

She’s not quite her usual wild, busy self. She’s very clingy to Mama and loves a good daytime nap, but she’s probably dealing with all the normal almost two year old things on top of everything her little body has been through. 🥹 She’s teething too, which certainly isn’t helping! And the steroid bloat is back… along with an appetite that could rival a teenager! 🤭😂

We also had an ENT follow up today. Ally has moderate hearing loss, which we had somewhat expected after her previous failed hearing tests and is unfortunately something that can be common in MPS. ❤️‍🩹 We’re going to work our magic with her hearing aids and hopefully convince our little madam to keep them on! 🤭😂 We’re just so excited about the possibility of helping her hear those softer sounds that are so important for speech and language development. 🥹

Please keep praying for Ally - for her numbers to continue rising, her magic cells to keep growing and her little body to keep getting stronger. 🙏🏼💜

We’re so ready for the day we can leave our little bubble behind and let her simply be a toddler.

As a mama, you carry so much guilt. Guilt that she’s anxious in new places. Guilt that you’re not doing enough. Guilt that you’re not letting her experience all the things a toddler should. And the constant battle of wanting to let her live and explore while desperately trying to protect her from all the nasty germs out there. ❤️‍🩹

For now, we’re taking it one day at a time and praying that her immune system continues to grow stronger, her magic cells keep doing their thing and she keeps making millions and millions of the enzyme her little body needs. 🥹🙏🏼✨

So proud of you, Ally. Keep going, my darling girl.
You are our little miracle. 💜💜💜

Address

Durban

Website

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

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