A Miracle For Millie, Canterbury (2025)

19/08/2024

So a bit of a humbling post 💛

When I arrived back from the US, I received a totally unexpected phone call from Mike Ziolek from BBC KENT RADIO….informing me that I had made it to the final four in the Awards in the fundraising catagory.

This was a total shock—as you can hear from the phone call lol…..I had no idea I had even been nominated and I still don’t know who made the nomination as it hasn’t been disclosed But to whoever took the time to nominate me, I owe you a massive, heartfelt thank you it was such a kind gesture and I’m truly grateful.

I never started this fundraising journey to gain recognition; I began it as a desperate mum trying to help free my daughter from the horrendous conditions she endures. But knowing that someone saw value in what we’re doing and took the time to nominate me is incredibly humbling, and I’m still in total shock!.

I’m sharing this news not for more recognition, but because this nomination belongs to all of us. Everyone who follows this page has played a part—whether through words of support, donations, or helping with fundraising efforts. This achievement is something we’ve accomplished together.

Reflecting on everything we’ve done, it’s unbelievable. In just six months, we organised two cycle rides, swimming events, runs, fetes, meat raffles, head shaves, beard shave, casino nights, golf and cricket days, auctions, a race night, bracelet making, rugby day, cake raffles—the list goes on—and raised an incredible £154k.

None of this would have been possible without each and every one of you.The awards ceremony is on 4th September.

I don’t expect to win; I didn’t even expect to be nominated! The other nominees are truly amazing, and I’m honoured to be in their company. But just being nominated is an honour beyond words. From the bottom of my heart, thank you again to all of you. 💛

A big thankyou to Sam Harding from who came to my home to do the interview which you can listen to part of it below

28/07/2024

Hi so sorry for not updating …they say no news is good news and I really wish this would be our case ….

So as we head into the fifth week of Millie’s hospital treatment. Millie is like a real-life Sleeping Beauty—she’s been sleeping 24 hours a day for the past five weeks! And I don’t mean napping here and there; she literally doesn’t wake up at all. We have to wake her just to give her fluids and food.

We have a follow-up appointment with the consultant who did her treatment scheduled for September 2025—yes, you read that right, a whole year away! I’ve tried contacting them, but their voicemail is full, and no one is answering my calls. Our GP has been amazing but is limited in what he can do. He’s arranging a home visit because this just isn’t normal.

The only silver lining is that while Millie is sleeping, she’s healing and not in pain. But this also means we’re really restricted in what we can do for her therapy-wise. It feels like when it rains, it pours. Sometimes, I wonder why I ever thought life could be easy. But we’re taking it one day at a time, and getting through it as best we can.💛

22/06/2024

Wow what a day ….another early start… We arrived at King's College Hospital at 7:30 am. Millie was taken to the theatre at 8:30 am for a procedure that was supposed to last an hour. Six hours later, she's still in theatre...unfortunately she didn’t react well …it’s been a long and scary day!

The staff here are absolutely incredible. The nurses, anaesthetists, and consultants have been so kind and considerate. I also met a lovely lady named Pauline, who helped pass the time for a couple of hours chatting and putting the world to rights with me. She recognised Millie from the news, which is wonderful as the more Millie's story gets out there, the more people will become aware of this horrendous disease. Hopefully, spreading awareness will help more people in the future. A massive thankyou to all those that have sent well wishes for her today💛

04/06/2024

My Darling Millie,

Today, as you turn 24, my heart overflows with pride and admiration. Over the past seven years, I have watched you face more challenges than most encounter in a lifetime. Your journey has been far from easy, marked by medical struggles and countless obstacles. Yet, through it all, you have remained steadfast and resilient, never allowing hardship to diminish your spirit.

Your strength is a beacon of hope, a testament to the incredible person you are. Every day, you inspire me with your courage and determination. Despite the pain and uncertainty, you have shown an unwavering resolve to push forward, to live fully, and to embrace each moment with grace.

You have taught me the true meaning of perseverance and the power of a positive outlook. Your ability to find joy in the midst of adversity is nothing short of extraordinary. You have faced each challenge head-on, with a bravery that leaves me in awe.

As you celebrate your 24th birthday, I want you to know how deeply loved and cherished you are. You are not just my daughter; you are my hero, my light, and my inspiration. Your journey, with all its highs and lows, has shaped you into the remarkable person you are today, and I am endlessly proud of you.

Thank you for teaching me the value of resilience and for showing me what true strength looks like. I look forward to seeing all the amazing things you will continue to achieve and the joy you will undoubtedly bring to the world.

Happy Birthday, my darling Millie. This is not the birthday you wished for but I will make sure your days filled with love and happiness and I know you will show the same boundless courage you display every single day.

With all my love Mumma 💛

03/06/2024

So our second visit to see the Quantum Neurologist in Surrey…..

It’s a long way a five hour round trip for a 30 min appointment but that’s all Millie’s body can tolerate at the moment

He says she has a misalignment in the occipital region of the skull, which is also affecting the sphenoid.Misalignments in the cranial bones can lead to various issues, including headaches, balance problems, and other neurological symptoms, so he worked on adjusting those. We have another appointment on Saturday.

Her legs and feet and flared massively due to him touching them and as you can see from her face in the pics she did not respond well to him touching her at all….but she persevered bless her 💛

29/05/2024

It’s been just over a week since we left the US and we are still trying to navigate our way forward.

We continue to provide medical therapies for Millie day in and day out, but we wish we had these two special people with us to help. They are worth their weight in gold, and we miss them dearly.❤️

28/05/2024

On November 25th, 2023, we attended a charity event at Canterbury Rugby Club to raise funds for .

At this event, two incredible individuals, Matt Pitchacaren and Ella Brocebank, from the remarkable charity Donations With A Difference, gifted Millie an astounding £19,500.

This generous donation has been a true godsend, enabling us to purchase some of the essential medical equipment needed to bring home from the US for Millie, allowing her to continue her healing journey.

We are beyond grateful to this small but mighty charity, which works tirelessly to alleviate physical impairment, poor mental health, and homelessness in Kent.

The immense generosity they showed by gifting such a substantial amount is a testament to their kindness and understanding. We urge everyone to follow Donations With A Difference on their social media and if you are raising money for a charity and are unsure who to donate to please consider supporting them in your fundraising efforts. They do phenomenal work, and their love and support have made a significant impact on many lives including ours!

Matt and Ella, your kindness will never go unnoticed. We will forever be grateful for your compassion and support. You have truly made a difference in Millie's life, and for that, we thank you from the bottom of our hearts.💛

25/05/2024

A NEW DAY A NEW ADVENTURE ….

ITS 530am and we are off to Surrey to see a Quantum Neurologist ….lucky to get a cancellation so we took it!

Wish us luck!

18/05/2024

WELL WHERE THERES A DISABLED PERSON THERES A DRAMA AND DISCRIMINATION!

ABSOLUTELY HORRIFIC! WE STILL DON’T KNOW IF THE WHEELCHAIR HAS BEEN CHECKED IN AS WE HAD TO LEAVE IT ….IF WE HAVE TOLD THEM ONCE WE HAVE TOLD THEM A THOUSAND TIMES THE BATTERIES ARE LITHIUM WE HAVE HAD THAT CLEARED ON THE 8 OCCASSIONS MR T HAS RANG BA ….YET THEY SRE STILL DISPUTING WHETHER THESE CAN GO ON THE FLIGHT…THEY HAVE TAKEN PICTURES OF THEM ….IDENTIFIED THEM …GOOGLED THEM ….IM JUST WAITING FOR THE POLICE TO TURN UP TO DO A BLOODY IDENTITY PARADE!

MY NERVES ARE ON TENTERHOOKS….
I AM SO SCARED OF MILLIES FEET GETTING KNOCKED …ITS LIKE TRANSFERRING A FRAGILE EGG AROUND THE AIRPORT IN THE HOPE IT DOESNT CRACK OR GET BROKEN …..IF IVE SAID OT ONCE IVE SAID IT A THOUSAND TIMES PLEASE BE CAREFUL OF HER FEET AS YET ANOTHER PERSON HAS JUST NEARLY FELL ON HER!

WE GET TO PASSPORT CONTROL AND MILLIES WHISKED OFF WITH SECURITY I RAN OVER TO HER AND GOT SCREAMED AT NOT TO TOUCH HER

THEY WANT TO CHECK HER FOR DRUGS /BOMB ABSOLUTELY FINE THEY ARE ONLY DOING THEIR JOB BUT THEY GOT ANNOYED BECAUSE SHE CANT STAND TO GO THROUGH THE SCANNER SO THEY SAID THEY WOULD HAVE TO PAT HER WHOLE BODY DOWN …..

I BEGGED THEM NOT TO DO THIS ….AND TRIED TO EXPLAIN HER CONDITION AND THAT TOUCHING HER WOULD CAUSE HER HUGE AMOUNTS OF PAIN….THEY LOOKED AT ME LIKE I WAS STUPID….i TOLD THEM I WAS NOT BEING DIFFICULT AND WE WOULD COMPLY WITH ANYTHING ASKED BUT PLEASE DONT TOUCH HER

SO I ASKED IF SHE COULD GO IN THE SCANNER FOR PEOPLE THAT COULDNT STAND AND COULDNT BE TOUCHED …(I was being sarcastic) THEIR RESPONSE ….ERM WE DONT HAVE ONE OF THOSE …..OH OK SO YOU ARE NOW GOING TO CAUSE MY DAUGHTER HUGE AMOUNTS OF PAIN BECAUSE YOU DONT HAVE THE CORRECT TECHNOLOGY TO DEAL WITH SOMEBODY WITH A MEDICAL CONDITION!

SO AFTER GETTING 8 STAFF AND THE DIRECTOR OF SECURITY ALL STANDING AROUND FOR 40MINS TALKING TO EACH OTHER AND NOT GETTING A SOLUTION I HAD TO GIVE THEM A BLOODY SOLUTION AND SAY I WOULD UNDRESS MILLIE BUT THEY WERE NOT TO TOUCH ANY BLOODY PART OF HER!

SO THATS WHAT MILLIE HAS HAD TO GO THROUGH…..HER ANXIETY IS SKY HIGH HAVING TO BE HUMILIATED LIKE THAT …..AND I HAD TO MAKE THAT CALL TO TRY AND STOP ANY MORE DISTRESS FOR HER! AS I SAID I UNDERSTAND THEY ARE DOING THEIR JOB BUT IF THEY ASKED HER TO BLOODY STAND AGAIN I THINK I WOULD HAVE GOT ARRESTED ….THEY EVIDENTLY LOOKED AT US LIKE WE WERE MAKING IT UP WHAT YOU CANT JUST STAND HER UP? WHAT YOU CANT JUST MOVE HER LEGS? WHAT SHE REALLY CANT JUST STAND FOR TWO MINUTES TO SCAN HER ….SERIOUSLY!

AND WE STILL HAVENT GOT HER ON THE PLANE!

18/05/2024

So, here we are... We've completed the five and a half hour drive from NC to Washington. Millie's back pain has worsened from sitting in one position for so long, and her anxiety is through the roof right now

We're heading to the airport five hours early because of the awful experience Mr. T and Millie had getting here.

Please, to anyone who's listening, let this be a smooth and easy journey! I don’t think we could deal with much more stress! ❤️

14/05/2024

Another day another drama
With just a couple of days to go we have another incident!

Leaving the hotel to come into clinic I press the disabled button to release the door and walk through ….Millie followed but started to scream …the door had flung back and trapped her arm in the metal release button …her pain and anxiety have flared and it has broken the electric control off her wheelchair

Honestly you couldn’t write it!

Hotels response …yeah that keeps happening!

Stress levels 10/10

11/05/2024

As we stand on the precipice of Millie's journey to the US for medical treatment, my heart is filled with a whirlwind of emotions. It's been an incredible rollercoaster ride, with moments of soaring highs and plummeting lows. With less than a week to go, reflecting on everything we've endured, from the moment Millie fell ill just before our planned departure, to the frustrating 8-hour delay and the subsequent cancellation of our hotel reservation, to having to re-source a new car at a further cost of £3k a month to Millie falling out of her wheelchair sustaining concussion and whiplash, causing and immense spike in her pain levels. This five month journey definitely hasn’t been an easy one and each obstacle seemed insurmountable.

The challenges continued to mount as we grappled with the unfamiliarity of a new country, the inability to obtain necessary supplies, and the exorbitant costs that weighed heavily on our minds.

But the unwavering love and support we've received from all of you. Your kindness, generosity, and empathy have carried us through the darkest moments, reminding us that we are never alone in this journey. We have met some incredible people along the way who will always be lifelong friends

As we prepare to embark on this next chapter of Millie's healing when we return home , our path forward remains a little uncertain. There will be more therapy sessions, we will need to travel to Surrey 2.5 hours away a couple of times a week to see a Quantum Neurologist and Millie will eventually need a lot of physio although at this time her body needs to continue to heal before that’s a possibility. so there are definitely more challenges to overcome.

But with each hurdle, we find solace in the knowledge that we are surrounded by a community of love and compassion. So, as we continue to navigate the road ahead, I want to express my deepest gratitude to each and every one of you. Your love and support has continued to help us even in the darkest of days.

The journey may be far from over, but I take comfort in knowing that Millie has made some great progress.
Her body is showing true signs of healing. Her upper body and head have reached 0 pain levels several times which is just incredible. Her pain is still exacerbated by things like washing her hair which takes the pain back to a 20 but Dr P is able to get this back to a 0 in two sessions ….which shows how much she is healing I just pray this continues when we get home I’m so scared of going home and not having Dr P there with us when we need him to get her pain levels down, but we have to get back to some sort of normality. We have nothing but gratitude and love for Dr P and Danielle for the love and care they show to Millie

Her feet and legs have made some improvements being able to move her feet for the first time in what feels like forever is truly amazing …but due to her feet and legs being the epicentre of her pain sadly these will be the last place to heal….

She has literally put her all into this programme. Her determination and courage continue to inspire me every day. Despite the pain and uncertainty, she has poured her heart and soul into this program, demonstrating an unwavering commitment to reclaiming her life.

Her willingness to push through discomfort, to try new treatments even when they exacerbate her pain, speaks volumes about her strength and resilience. It's a testament to her unwavering spirit and her refusal to let adversity define her.

Millie's progress is not just a reflection of her physical healing, but also of her indomitable spirit and her unwavering resolve to embrace life with courage and tenacity. Her journey is not over but we will continue to fight with everything we have to reach the end goal of Millie being able to walk again and be free from these horrendous conditions.

29/04/2024

With things feeling pretty sh*t at the moment ….this made Millie’s day meeting jonathan aka foodgod ….the nicest man who took the time to ask Millie about her conditions and her life…look at her smile ❤️

24/04/2024

In the depths of our strength, there lies vulnerability, a point where the weight of it all becomes too much to bear.

It's not about weakness but about being stretched beyond limits.

Today, it's not about giving up; it's about acknowledging that enough is enough. The journey has been a tumultuous rollercoaster, leaving us all tired and longing for the comfort of home, and the warmth of familiar faces.

We've poured our hearts into this endeavor for five long months, doing everything asked with unwavering dedication. Yet, the harsh reality of our current plight overwhelms us.

I just want this rollercoaster to be over …I just want my daughter to be free from pain….i just want normality ….everyone has a breaking point ….todays mine! 💔

05/04/2024

Wow what a brilliant day!!! Dr P performed a new treatment on me and I can’t believe how amazing the results are. Although it really hurts to get the treatment done it gave me some incredible pain drops 🙌🏼 I’m soooooo happy😄and for the first time ever…I can’t stop smiling 😁THANKYOU SO MUCH 💛

30/03/2024

Sorry we haven’t posted for a while …life has definitely been very up and down the last few weeks but finally we feel a level of calm

After Millie’s wheelchair accident the pain had escalated in her upper body and head to. 20/20

A week ago Millie had a different type of treatment on her neck as she had no movement it had seized …and amazingly after just one treatment from Dr P Millie although still painful had full range of movement in her neck

However unfortuntely the treatment caused her upper body to flare excessively

Millie gauges her pain levels out of 20 but her back, arms, shoulders, chest , forehead, face, back of head and top of head all went to a 30 a pain level she’s not experienced before

It was a very low week for Millie sadly

But as always the girls got punch she had a really low couple of days from Friday to Sunday and was extremely sad

However Monday as per usual she puts on the positive pants and goes back to clinic with grit and determination

This week has seen some great changes after lots of love and care from Dr P and Danielle Millie’s levels have made significant drops

Top of head 25/30
Forehead 30/30
Back of head 30/30
Face 8/30
Chest 20/30
Shoulders 20/30
Arms 20/30
Back 30/30
Feet 12/20
Legs 11/20

So when we gauge Millie’s CRPS pain it is scored out of 20 so if she’s a 20 it means whatever we did to her her pain would not increase as this is the worst it could possibly be

The reason this was able to increase to a 30 is due to a combination of CRPS flare and also injury pain

Unfortuntely there are no rules with her pain scores she tries to keep these as consistent as possible but as we now with this awful condition it’s not as easy at that

So as we finish another week we remain positive and look forward to going back to the clinic on Monday to continue the treatment programme

Millie’s attitude this week has been amazing …I don’t think I could still smile if I were in the pain she is in but she has such belief and faith ….she sees and feels these improvements and it continues to give her hope 💛

⭐️

15/03/2024

Honestly you couldn’t write it ….just when we start to see some fantastic pain drop levels Millie has an accident

So yesterday we only had one clinic so in the afternoon I decided to take Millie out to get some fresh air

As we started walking up a slope the wheelchair just fell backward …I tried to catch it but it pulled me down with it …..Millie smacked her head and back on the concrete

I was literally beside myself as I couldn’t get her up ….we were so lucky that a lovely couple stopped to help us ….they offered to drive us to ER But Millie started having a panic because she has PTSD due to the way hospitals have treated her in the past

We managed to walk home but I’ve never been so worried in my life I really wanted her just to get her back and head checked but had to respect her wishes and I didn’t want to put her in any more of a panic

She was in shock and felt really sick

Dr P is away for a couple of days on training but he still rang us to make sure Millie was ok and said that we could ring him regardless of whether it was 3 in the morning if we needed him! What doctor does that! We are so lucky to have him!

Millie seemed ok and I managed to get her into bed but she had a really bad night and is in serious amounts of pain this morning levels have gone sky high. We obviously know the impact of what’s happened will have an affect but all these set backs are not helping

We are literally wishing our lives away for Monday so we can get back in the clinic for treatment

One thing this girl never does is feel sorry for herself. She’s sad and hurting but when I got upset this morning she said it is what it is …I learn from her every day she really is my inspiration

Why can’t this girl be given a break! 🥲

⭐️

13/03/2024

Put yourself in my shoes

A 17 year old girl living a great life everyday when CRPS came and cruelly stole it away

Imagine a life of waking up to pain
and then the whole day feels exactly the same

When your food is given but on the side of the plate
a mountain of pills that I literally hate

Imagine never being able to plan your day, because you never know what’s coming your way

I can’t go to the cinema because the vibrations cause pain,
I can’t sit in the sun or dance in the rain

I can’t go to a party or go out and have fun
I can’t even walk let alone run

I feel so isolated I feel so alone
and I have no friends that I can just phone

I don’t ever sleep because of the pain
the lack of sleep and tiredness drives me insane

Locked in a body of fire everyday
But I can’t put it out it won’t go away

I can’t wear certain fabrics I can’t even wear shoes
I can wear clothes but not the ones I would choose

Everything has to be soft not harsh on my skin
so pyjamas are now definitely my thing

Imagine not being able to bathe or wash my hair
as it feels like bullets being fired everywhere

When your skins so sensitive just a drop of rain
will burn my skin and make me feel pain

The slight touch from a towel a kiss on the skin
the pain that it causes where do I begin

And when all you want is a hug because you’re feeling so s**t
but the impact it’ll have is the worst I’ll admit

Half of my body overheats the other half is ice cold
I can’t regulate temperature well that’s what I am told

My body is always in a state of fight or flight
I have no control it doesn’t feel right

They thought I was mad they said they can’t see the pain
the times I’ve had to explain time and again

This pain is real! I’m not going mad
my heart is breaking I feel scared and so sad

My body is burning it feels like it’s on fire
but people look at you and think you’re a liar

I feel stabbing pains like I’m being stabbed with a knife
but this is CRPS….. this is my life

No one listens I just wish for one day
you could feel this pain but not let it stay

As I wouldn’t want anyone to feel what I do
It’s excruciating and takes everything from you

I’ve been told to pretend the pains not there and it will go away
this pains not going anywhere it’s here to stay

When you try to be positive and try to show the world you’re not moping
but inside you’re breaking and really not coping

I now cannot walk my Abilities lost
tears and upset all part of the cost

My minds overloaded and heavy with despair
I don’t want pity but this isn’t fair

It’s upsetting when people don’t believe what you suffer is real,
because they are not in my body they don’t know how I feel

Should I roll round screaming on the floor because believe me I’ve done that many times before

I feel like a caged animal always being trapped inside
although at times I feel so exposed and there’s nowhere to hide

I live my life behind a mask, to the world I seem fine
but I don’t live your life as you don’t live mine

Emotions are high but feelings are locked away
so stressed at the thought that this is here to stay

But despite all this I will continue to fight
CRPS you haven’t won you don’t have the right

You’ve taken six years of my life please don’t take anymore
there’s a whole world out there I want to explore

Please CRPS you’ve had your fun
you took my life when it had just begun

I’m doing everything I can with might and full force
because I’m tired of having patience taking its course.

I’ve found a doctor …Dr P is his name
He is so caring and funny but his jokes are insane

I pray Dr P can heal me and take this pain away
as I can’t imagine a life if this pains here to stay

He gets me, he doesn’t judge he understands this pain
I trust him and I never have to explain

He knows about CRPS and all the neurological stuff
and I’m so glad I’ve found him as I’ve now had enough

He’s an amazing doctor and in my heart I can feel
that with his knowledge and heart I can finally heal

Progress feels slow but I’m making small improvements each day
I will beat CRPS it is not here to stay

Release me now and let me be
You’ve had your moment and won your victory.

I pray this bit of the journey will be the last chapter in this book
and I can look back on the 6 years that CRPS took

And move forward and live a life free from pain
a life of happiness and being me again

CRPS It’s now time to set me free
let me have a life of just being Me

A Miracle For Millie

19/08/2024

28/07/2024

22/06/2024

04/06/2024

03/06/2024

29/05/2024

28/05/2024

25/05/2024

18/05/2024

18/05/2024

14/05/2024

11/05/2024

29/04/2024

24/04/2024

05/04/2024

30/03/2024

15/03/2024

13/03/2024

Address

Telephone

Website

Alerts

Contact The Practice

Shortcuts

Share

Category