Paul’s Story
In January this year, our precious, precious boy Paul was diagnosed with the incurable rare disease Duchenne Muscular Dystrophy.
Being told this about my baby has cast a darkness over me that will never, ever light up again. My heart is completely broken, not for myself but for my beautiful boy. We will grieve forever for everything that will be taken away from him as he grows.
Normally, I share my sadness with the skies alone, but I’ve realised I’ve never actually known sadness after all. To know time is now limited is the deep-rooted sadness that will never pass for us. Our future is uncertain, but we will fight to make it bright for Paul.
At the moment, Paul is unaware that he is so desperately unwell, and his unwavering and constant love, affection, energy and smile have been the superpower we needed to get us through the crippling days and nights. His thrill-seeking personality has taught us that no matter what, we must make every day count.
He has been living with this disease since he was born. It has been attacking and tearing all of his muscles, and we didn’t even know, which has been difficult for us to accept.
I certainly felt he wasn’t as mobile as I would have liked, and when he would always want carried, well, I’ve had him in my arms from the day he was born. I just assumed it was his favourite place, so I was happy to give myself a hernia carrying him about everywhere.
I prayed every day that he would start talking, and when he finally did in late December, I breathed a sigh of relief and just felt so, so happy for him.
The Day Everything Changed
Our newfound relief was not to last long.
I went from what I thought was a routine hospital appointment to a conversation with Paul’s doctor about expectations over his quality of life. When the doctor told me that some boys with Duchenne now live past their teenage years, whereas a few years ago this wasn’t expected, I think this is when my heart just completely shattered.
It’s a day that I find difficult to even attempt to put into words. I came home and decided to go about my business as normal, and even dropped Paul at his musical theatre class. Every time I think about it, I feel physically sick.
Giving Paul the Life He Deserves
However, it has been my mantra ever since: “We have to give Paul the life he deserves while we can.”
I feel that, in some way, God told me from the moment I met Paul that he was a really special one. He found ways to let me know that I had to cherish every moment with him and enjoy every milestone with my full heart, and this is exactly what I have done.
He has been mine, his dad’s, Joy, Hope and Franco’s whole entire life since the second he arrived, and we will dedicate every minute of every day going forward to his health, comfort, care and happiness.
So far, Paul has fought his battle silently, but now it’s our turn to fight it for him. I haven’t been able to say the word “Duchenne” without blinding tears and crippling panic, but I just have to fight this for my beautiful, happy boy.
We need a miracle for Paul. John and I are begging God and all the saints every day to help him, and I would like to ask all our friends and family, and indeed your friends and family, to say a prayer for him or even just send him some healing, positive energy in your thoughts. It would really mean the world to us as a family.
Paul’s Medical Journey
Our brave boy started his medical journey in February. It took John and I a few weeks to get our heads around the medicine and actually give it to him, but as soon as we did, Paul showed great strength.
Even though the medicine doesn’t taste nice and can at times upset his wee system, he takes it without any protest. It is a very strong steroid which can create many side effects, but I am convinced Saint Martin has helped with this because I have begged him every day to help Paul take his medicine and help me to be strong enough to encourage him, even when he doesn’t want it.
In actual fact, it gives him particularly bad wind, both top and bottom, which he thinks is the funniest thing in the world, so everyone joins in with raucous laughter at his constant farting. He loves it and if I don’t laugh, I’ll cry, so I choose to play along and laugh, until I lock myself in the bathroom and cry. John is happy to join in with the wind-breaking competitions.
The thought of having to force him to take the medicine was a real worry to us, but so far so good, so thank you, Saint Martin. I will continue to ask for your help with this and shout from the rooftops when you do. I really believe you can hear me.
Growing Hope for Paul
Our lives have changed overnight. Our only focus now is to give Paul the best life we possibly can, with memories, experiences, comfort and, as ever, our unconditional love.
We are in touch with other families throughout the UK receiving treatments in America, and we are keeping a close eye on the results. The challenging issue with this is that gene therapy or exon skipping treatment in America costs 3 million dollars, but I know I can raise that in probably about six months.
We just want to grow hope and make sure that, where possible, Paul’s dreams come true.
I have battled through really tough days to keep things as normal as possible for big brother Franco, who is Paul’s hero and the best brother we could have dreamt of for him, and of course his two wonderful sisters, Joy and Hope.
Duchenne Muscular Dystrophy is an extremely rare, aggressive and progressive disease, with no cure.
My days and nights have been crippling. The feelings of helplessness have at times been so overwhelming they have completely taken over my body and mind, and there have been days where I’ve worried that I might not be able to cope with the sadness that completely panics me.
John is, of course, trying hard to be strong for us all. He has already known complete devastation and knows the importance of pushing forward, but even he can be laughing one minute and completely breaking down the next. Loving Paul is the only thing keeping both of us sane.
Personally, I’ve got myself through the last few months by not telling anyone about Paul’s heartbreaking diagnosis, not because I didn’t want or need anyone to know, but because I felt that I needed to just cling onto our “normal” life for that little bit longer.
There have been times this has brought me more sadness than it should have. Maybe my subconscious thought if I carried on as normal, maybe it wasn’t true.
Unfortunately, it’s absolutely true, and as a mum I’m slowly coming to terms with that. As a dad, John felt he had already been through his worst, but God has had other plans.
Why We Started Hustle for that Muscle
Having recognised that I need to do something to feel like I’m helping Paul in some way, I have decided to start a wee venture for Paul to hopefully follow him through his Duchenne journey.
I want to be prepared for the changes and adaptations that will come into our lives, and I want Paul to grow knowing that we are doing everything we possibly can to help him. We want to raise as much money to help him as possible, and who knows, maybe we will indeed get the 3 million dollars.
So I have created this website where you can buy kids’ and adults’ hoodies, t-shirts and hats. The small profit made will be kept for Paul’s benefit.
Everyone that knows me knows that my favourite thing in the world is to dress my boy up in the coolest outfits, so I thought I’d put my passion to the test. Hopefully, if this wee business works out, eventually when Paul is a bit older he can help with some ideas of his own.
Every Gesture Means So Much
Please help us if you can. Even the smallest gestures mount up and we, including Paul, will forever be grateful.
If you’re not that into hoodies, any donations will be kept solely for Paul in the event of anything that we find could benefit him, and of course I’ll be completely transparent about that throughout his journey.
We are so lucky to have the NHS and the amazing doctors and nurses, but the possibility of having to travel to America for treatment will always be something we will aim for.
Time is precious. We knew that already, but now we have the chance to make sure we have no regrets over time not spent or memories not made.
Setting up this venture is something I’ve toiled with. Should I or shouldn’t I?
But I always arrive at the same answer. It’s for Paul, my baby, my happiest day, my reason.
We, Paul’s family, need to do whatever we possibly can for him. So please, let’s help Paul to live his best life while he can and help us Hustle for his Muscle.
With love,
Paul’s family
A Poem for Paul
Of course you don’t think your child will live forever.
But did you ever think they won’t?
No never!
Because when you are handed that little bundle of joy,
and hear the words “it’s a boy, it’s a beautiful baby boy”,
all you can envisage is a healthy life,
one that is lived to ripe old age.
A happy life,
and maybe along the way,
a beautiful wife,
possibly some petty teenage
trouble and strife.
Who wants an angel eh?
Are any of them angels?
Of course the exception being,
when they are swaddled in the cradle.
Believe me, with boys, the mischief comes a plenty,
and their approach is not always gently.
But there is never a day I don’t cast my eyes above
to thank God for this precious love.
But I digress… a symptom I guess.
Maybe sometimes you’ll think
“This one’s gonna break my heart”,
but that’s just chit-chat among friends.
My boy ain’t about to break trends.
Because he’s mine,
I’m pouring my heart
and soul into him,
teaching him, how to love,
and to pray to god above.
Teaching him how to be kind,
and more importantly,
take care of his mind.
Then I,
completely unsuspecting,
am entered into the saddest discussion about Life expecting,
and the big one… Time.
It creates the chime,
the constant and unwavering
chime in the mind
that never silences.
Time becomes all consuming,
and now something I’ll never assume.
Never, ever assume.
Because we all know what assuming makes an ass of, and it’s certainly not others… it’s us!
But what it doesn’t affect is love.
In fact love grows.
And for those who have chose love and kindness,
know this,
I see you & I hear you.
My boy is precious,
he’s been sent from thee most high, God Above.
He’s my Paul,
my everything and my all,
my happiness and my thankfulness.
He’s the sunshine
and I’m so grateful he’s all mine.
And we will spend our precious time wisely,
because he is my life’s prize.
And may time last forever…
We can pray and pray,
and of course I will adopt
the “never say never”.
I have great faith, I also have a Joy,
a Hope, and a Franco too,
and I pray that until the end of “time”… I’ll also have you.
To my darling Paul,
I have made rhymes in my mind for as long as i can remember.
I’ve never shared them with anyone, ever,
except you,
probably too worried about what people may think.
But recently someone gave me the wink,
and I myself, have the sense to know
it might save me a visit
to the shrink.
“Write them down” she said.
Above all it might help you,
but think about it, it could possibly help someone else too.
So here’s the first time I’ve put pen to paper.
And for these thirty minutes it’s taken me, I’ve ironically turned into
the escaper…
From the chime of TIME.
