Alyssasmps1journey

05/08/2026

As we were warned, the transplant journey is full of ups and downs…

Please keep our sweet Ally in your thoughts and prayers. 🙏🏼❤️‍🩹

She’s still smiley, active, full of sass and as everyone says “she looks amazing!” but her neutrophil count is very low. We’ve been called in for G-CSF injections to help boost them. (Poor baby 🥹💉) She’s also still battling a cough that just doesn’t seem to go away. We’ve now been prescribed an inhaler to see if it helps. We’re not sure if it’s contributing to her low neutrophils or if her body may be making antibodies against them. We’re trusting her medical team as they continue to investigate.

Please pray that the G-CSF works well, her neutrophils recover, her cough finally clears and that she continues to thrive.

Our strong, beautiful warrior princess. 💜

I truly appreciate every single message, prayer and everyone checking in on us. Being on my own with Ally, I don’t always have the time to reply but please know that every message means the world to us. Thank you so much for your understanding and for continuing to stand with our family. 🤗

Lots and lots of love from us ###

02/08/2026

🇬🇧 JANUARY 2026: 6 months ago, we arrived in the UK with a few too many suitcases and no idea what the months ahead would hold.

And here we are… still living out of those suitcases. 😵‍💫🫠

We came here for one reason: to give our little girl the chance at a healthier future through a brutal bone marrow transplant. These last 6 months have been filled with hospitals, blood tests, the strongest medications in the world, tears, setbacks, milestones, fear, hope and more strength than we ever knew was possible.

Looking back at these photos, it’s incredible to see how much Ally has changed and everything she has gone through. 🥹 The hardest thing we’ve ever had to do was bring our happy, healthy little girl here, knowing we had to make her so incredibly sick in the hope of giving her a healthier future. ❤️‍🩹

You are so deeply loved, baby girl and such an inspiration to so many. I wish you never had to be this brave but I’m endlessly proud of the courage, strength and resilience you’ve shown every step of the way, including adjusting to a new country and a new place to call “home away from home”. I couldn’t be more proud to be your mama. 😍

This journey has changed us forever. It hasn’t been easy but it has shown us just how resilient one tiny little girl can be.

Here’s to believing brighter days are ahead. 💜

Thank you to every single person who has walked this journey with us, prayed for us, encouraged us and loved our family from near and far. We truly couldn’t have done it without you!! ❤️‍🩹

Keep smiling, shining and giggling your way through life, my darling. You’ll go beyond anything we could ever imagine. 🌈💜🌟

29/07/2026

🌟 HEAD INJURY UPDATE 🌟

Gosh. That was the most traumatizing thing ever. ❤️‍🩹

MRI scan… AWAKE.

If you’ve ever seen an MRI machine, you’ll know how overwhelming they are. They place your head into a tight frame, pack cushions around it so you can’t move, put a helmet-like cage over your face and then you’re sent into a tunnel surrounded by loud banging noises and flashing lights. It’s intimidating even for adults… never mind a little girl. 🥹

I had to climb into the machine with Ally and hold her down. 🤮 As a mom, having to hold your child down for medical procedures is one of the most heartbreaking things you’ll ever have to do. Every instinct in me wanted to scoop her up, make it stop and be her safe place. 😢 BUT…

✨ Her MRI looks good! ✨

The injury hasn’t gotten any bigger, the fluid around her brain looks good and the neurosurgery team has no concerns. 🥹 They explained that head injuries can take 3–6 months to heal completely, so now it’s just a matter of time to completely heal.

I am so incredibly proud of our girl! My heart explodes with pride. She has been through more in her little life than most people experience in a lifetime, yet she continues to amaze us with her strength, resilience and courage every single day.

A smile that lights up every room, a laugh that melts every heart and a spirit that refuses to let the hard times steal her joy. 💜

I won’t lie… I am so ready for a break from hospitals, scans, medicine alarms and appointments. 😅 I’m dreaming of the day we can pack a bag, go on holiday and just be a family making happy memories together. 🥰

Tomorrow we have another appointment with an audiologist. Ally has failed her hearing tests since birth, so we’re checking in to see where things stand and whether she may need hearing aids.

One day at a time. 😊

20/07/2026

Just a girl, her daily walks to the park and her bagel. 🥯🌿🤍

16/07/2026

🌟 DAY +122 🌟 | FOUR MONTHS 😱🥳🤩

Yesterday was clinic day and Ally’s day was made getting to play with her little bestie, our neighbour from one of our hospital admissions. Watching them together was the sweetest thing. 🥰 It’s hard to believe my baby is now happily fitting in with the bigger kids. 🥹

She also had the best time going crazy with our lovely nurse, Polly. 😂🌪️🤸🏻‍♀️ I’m so excited for the day isolation is behind us and she can finally enjoy all the things a busy little toddler should, especially water play / bath time with absolutely no limits! 💦😂 (Miss Wiggles (her Hickman line) can’t get wet 😩)

One thing I’ve noticed lately is how much comfort she finds in familiarity. After months of isolation and a very strict routine, anything different usually gets a hard pass from Ally. 😂🥲 I suppose that’s what happens when your whole world becomes so small for a little while. ❤️‍🩹

But we’ll get there… 🌻✨

She creates happiness everywhere she goes and truly is the bravest, strongest, most beautiful little warrior. Watching her take on everything life throws at her with the biggest smile will never stop amazing me. 😍💜🌈

14/07/2026

Mama’s mini bestie and biggest copycat 😂🎀💖✨

14/07/2026

Just out here creating memories… and a mess big enough to keep mama busy for hours. 😂🎨💜

09/07/2026

💜💜💜💜💜💜

More than 100 days after her life-changing bone marrow transplant, baby Ally continues to inspire with her resilience as she recovers from MPS1 and a recent serious fall.
More here: https://www.citizen.co.za/southlands-sun/news-headlines/2026/07/09/baby-ally-hits-day-100-in-mps1-journey/
Alyssasmps1journey

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