Alyssasmps1journey

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

🌟 DAY +87 🌟 Day 100 is creeping up and I honestly can’t believe it. 🥹 Ally’s bloods are all still looking good!! There a...
11/06/2026

🌟 DAY +87 🌟

Day 100 is creeping up and I honestly can’t believe it. 🥹 Ally’s bloods are all still looking good!! There are no concerns from the transplant team, which we’re so grateful for. 🙏🏼❤️‍🔥

We’re still in hospital and haven’t had the MRI yet. The team doesn’t want to discharge us until the scan is done and in the meantime they’re planning to keep Ally in a neck collar. 😭

The MRI is now booked for Tuesday at 8am. FINALLY.
Please keep praying for the very best news and for 100% healing for our bravest, strongest girl. 💜

She’s doing okay - her neck is still a little stiff and she’s not eating as well as usual, but at least she is eating small amounts and still taking her meds like a champ! 💪🏼 Most importantly, she’s playing, giggling and getting stronger every single day, which makes our hearts so happy. 🥹

If you have an Ally shirt, please wear it on Tuesday. If not, wear purple to send all the love, luck and positive thoughts our way. 💜

This has been incredibly exhausting and feels even harder than transplant. But seeing Ally’s smile and improvements every day gives us so much hope and reminds us how strong she truly is. ❤️‍🩹

Thank you all so much for your love, prayers, messages and support. We appreciate every single one of you more than you know. ###

No MRI today.. possibly tomorrow. We’re on the emergency list.. but it’s quite a list!The good news? We’ve seen HUGE imp...
08/06/2026

No MRI today.. possibly tomorrow. We’re on the emergency list.. but it’s quite a list!
The good news? We’ve seen HUGE improvements over the last 24 hours. 🥹✨

After 5 days of pretty much sleeping, not wanting to eat, play, sit up, walk or have anyone else near her, our little girl is finally starting to feel more like herself again. Last night, Ally started scratching at her neck (thanks, morphine 😭), but it also meant I noticed she was actually moving her neck a little bit! 👏🏼

This morning was even better. Ally was sitting up, playing and so desperate to get out of bed. In fact, she cried when we tried to keep her there 😂🙈. I was also lucky enough to get three kisses to start my morning 😍

She’s still not moving her neck 100%, so her walking is a little wobbly, but the difference is incredible. She’s eating, drinking her bottles and showing us little glimpses of her cheeky personality again. 💜

She’s managed a few little steps of walking… and then immediately wants to run everywhere 😅. Safe to say Mama & Gigi’s anxiety levels are not okay! 😂🙈

One thing that’s really got me today is when we tell Ally to “be careful”, she taps her little head. 🥹💔❤️‍🩹 She has started copying me picking my nails… naughty mama! 🙈 But look at those edible cheeks 😍 And she ended the day blowing lots of kisses goodbye to our lovely nurse, Ruby 😘😘

Ally’s favourite human came to visit too, 💜

We’re praying for a good MRI result and hoping we’ll be discharged soon. 🤞❤️‍🩹

Ally, you are amazing. The strongest little human I know. You bring out a strength in me that I never knew I had and I am so incredibly proud to be your mama. 🥹🥰

Keep going, baby girl. We’re all cheering you on 👑

❤️‍🩹 Update ❤️‍🩹This is her “mmm” face when I asked if she wanted another Pringle .. 🤔💋 Ally’s MRI has been moved to Mon...
07/06/2026

❤️‍🩹 Update ❤️‍🩹

This is her “mmm” face when I asked if she wanted another Pringle .. 🤔💋

Ally’s MRI has been moved to Monday. Because of the extra risks sedation carries with her MPS, the doctors feel it’s safest to wait until the full specialist team is available. They’ve reassured us that this won’t affect her treatment unless an urgent concern arises but we’re continuing to see small but encouraging improvements. 🙏🏼

The best news? Ally’s smiling! 🥹😍 The doctors said it absolutely made their day and it certainly made ours too. She waved bye. She’s holding books and reading. She’s eating a few Pringles & skips. She had some bottle last night for the first time (she’s only been wanting water). She’s used her right hand to “paint”. She’s pushing herself up against me and even turned to her toy bag last night.

The doctor explained that because the injury is on the left side of Ally’s brain, it is affecting the right side of her body. This explains why she’s not using her right side as much right now. 🥲 (but again, we are seeing improvements daily!! 🙏🏼)

This girl is incredible! You amaze me every single day my Ally bug. Your strength, courage and determination is unmatched 💪🏼

We are so incredibly grateful for the love, support, prayers and care we’ve received since day one. Please continue to pray for Ally.. for complete healing, no long-term effects and a speedy recovery.
We can’t wait to have our busy little girl back. 🥹💜

Phew! What a journey this has been….
Thank you for walking it with us. 🥰 xx

💔 We have had the most traumatic two days.After Ally had a fall, she became completely floppy so I ran with her straight...
05/06/2026

💔 We have had the most traumatic two days.

After Ally had a fall, she became completely floppy so I ran with her straight to the hospital. Since then, it’s been a whirlwind of tests, worry and waiting.

After three unsuccessful attempts, Ally finally had a CT scan under sedation. The results have shown a small fracture and bleeding on the brain. Thankfully, there is no active bleeding but she will continue to be closely monitored.

My heart is completely broken seeing her like this. She’s in so much pain and is basically just asleep on me. She’s not sitting, standing, or walking and doesn’t want anyone to touch her or come near her. It’s just not our Ally. 😭

The neurosurgeon is now discussing her case with our team to decide whether she needs an MRI tomorrow, which would mean another general anaesthetic. 💔

We know we’re in the best place possible, surrounded by the most incredible team who are taking such wonderful care of Ally. ❤️‍🩹

Thank you to everyone who has reached out and sent their love. Please don’t be offended if I don’t reply.. everything feels incredibly emotional and overwhelming but we truly appreciate your love and support. 💜

Please keep our brave little girl in your thoughts and prayers. We need every single one of them right now. We are praying that our beautiful, smiley girl will soon be back to herself again. ❤️‍🩹❤️‍🩹❤️‍🩹

I’ve spent tonight reading through messages and honestly, I’m overwhelmed with emotion. 🥹😭❤️‍🩹The love, support, encoura...
03/06/2026

I’ve spent tonight reading through messages and honestly, I’m overwhelmed with emotion. 🥹😭❤️‍🩹

The love, support, encouragement, prayers, gifts and check ins we’ve received throughout this journey have carried us through some of our hardest days! There aren’t enough words to express how grateful we are to every single person who has reached out and stood beside us. 💜

I know I’ve been terrible at replying (I’m so sorry! 🫣), but please know that every message has been read, appreciated and held so close to my heart! Even when I haven’t had the energy or headspace to respond, your kindness has meant more than you’ll ever know. ❤️‍🩹

I’m determined to get back on top of my messages and reply properly.. and on time 😅
But just wanted to say the biggest THANK YOU for loving our family, for cheering Ally on and for helping us feel less alone during this chapter. 🥰🙏🏼

We are so incredibly lucky to be surrounded by the most amazing village 🥹🌈💜

🌟 DAY +77 🌟 Sorry we’ve been so quiet… it’s been a crazy, stressful week 😅 Every day feels like a new challenge and a re...
01/06/2026

🌟 DAY +77 🌟

Sorry we’ve been so quiet… it’s been a crazy, stressful week 😅 Every day feels like a new challenge and a reminder not to take the simple things in life for granted!!! 🥳🤩

I won’t go into too much detail on social media, but Ally had blood in her stools, which led to a trip to A&E last Monday 🏥 followed by a constant runny nose that seems to go all day, every day. 🤧

The good news is that after an ultrasound and lots of tests, everything has come back looking good! 🙏✨ No bugs 🦠, no concerns on the ultrasound and we’re feeling a little less stressed. Her little body is still very much in recovery mode, especially her gut but despite everything she’s been absolutely fine in herself and is still our wild child. 🥰

One of our biggest day to day challenges is her Hickman line. It’s a central line that goes into a large vein near her heart and is used for treatment, medications and blood tests. It’s been such an important part of her journey but my gosh, it definitely comes with worries too! Ally is fearless 😂🤸🏼‍♀️ climbing, jumping and never stops moving! 🌪️ Sometimes the line gets tugged or caught and even bath time is a challenge because it can’t get wet. 🛁💦 It’s a real love-hate relationship, but we’re so grateful for it because it’s helping keep our girl well and making the medical side of things that little bit easier. 💉❤️

Through all the appointments, tests and worries, the greatest gift is getting to watch Ally’s personality shine brighter every day. ✨🥹 She’s hilarious, fiercely independent, full of sass 👑 and determined to do everything herself! She keeps us laughing, keeps us busy and reminds us every day just how lucky we are to call her ours.. 😍

We have clinic and more blood tests on Wednesday 🩸so we’ll update again after that. We’ve had so many lovely messages checking in on us, so we just wanted to let you all know we’re okay 🤗💜

Please continue to pray for Ally to thrive, grow stronger every day and continue moving from strength to strength with as few side effects as possible. 🙏💪✨

We appreciate every single one of you and are SO thankful to have you in our corner ❤️‍🩹❤️‍🩹❤️‍🩹

🌟 DAY +68 🌟 This is Ally’s morning meds. She then has more throughout the day: some every 4 hours, some every 6 hours an...
23/05/2026

🌟 DAY +68 🌟

This is Ally’s morning meds. She then has more throughout the day: some every 4 hours, some every 6 hours and the rest twice a day. She takes every single one like an absolute champ even the gross ones that give her the shivers 💪🏼💊

Ally continues to do really well 💜
I’ll be honest… I’m feeling a little bored and slightly insane lately 😅 Our days are basically living out of one tiny room or walking to the park. I really miss our normal life of not constantly stressing about germs or every little symptom that shows up. Or enjoying outings even just to the shops!

I also feel so guilty sometimes that Ally can’t go into soft play or children’s play areas just yet 😭 But I know all of this will be worth it in the end. Maybe this season is teaching us to slow down and enjoy the simple things for a while ✨

Ally is on some very strong medicines at the moment and they come with lots of side effects. One of them is cyclosporine, which makes them VERY hairy 🐻 As you can see, Ally’s eyebrows have started turning dark black, it looks like she’s dyed them 😳
The steroids are also causing lots of puffiness and bloating around her face, neck and tummy. These poor little humans really do go through the absolute most with the biggest smile on their face 🥺

We’ve been reassured that once the medicines stop, the side effects should slowly go away too, including the extra body hair. 😅🙏🏼

Yesterday was so hot, so Ally had her very first soft serve ice cream and absolutely loved it 🥰🍦☀️

Have a lovely weekend everyone.
We’re sending lots of love 💜💜💜

Her happiness is contagious 🌞💕
18/05/2026

Her happiness is contagious 🌞💕

Today is MPS Awareness Day and as a parent, this day carries a weight and meaning I never expected to know.Our beautiful...
15/05/2026

Today is MPS Awareness Day and as a parent, this day carries a weight and meaning I never expected to know.

Our beautiful Ally has MPS 1 - Hurler Syndrome.
Mucopolysaccharidosis (MPS) is a group of rare genetic disorders caused by the body’s inability to produce certain enzymes needed to break down complex sugars called glycosaminoglycans (GAGs). When these sugars build up in cells, tissues and organs, they cause progressive damage that can affect the heart, skeletal system, vision, breathing, growth and overall development. Many people go their whole lives without ever hearing the term “MPS,” just as I once did.

Before Ally’s diagnosis, I didn’t know any of this.
I didn’t know what glycosaminoglycans were, or how a single missing enzyme could change so much.
I didn’t know how rare this condition was.
I didn’t know how strong a child could be.

But now I know.

I know the fear that comes with hearing unfamiliar medical words.
I know the strength it takes to show up for appointments, treatments, surgeries, therapies.
I know the courage of a child who faces more in a year than many adults face in a lifetime.
I know the love that grows even stronger when life becomes uncertain.

And I know how desperately awareness is needed.

Because early diagnosis brings better outcomes.
Because research brings families hope.
Because no family should have to fight in the dark for answers.

So today, I’m asking you to help us shine a light.

💜 Wear purple.
💜 Share this post.
💜 Learn something new about MPS.
💜 Stand with families navigating rare disease journeys just like ours.

Ally is more than her diagnosis. She is joy. She is strength. She is possibility.
And today, we honor every MPS warrior and every family walking this path.

Thank you for being part of our world.
We see you. We appreciate you. We love you. 💜

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