Triumph For Tomas

Triumph For Tomas Our objective is the promotion and protection of good health among people suffering from Pelizaeus-Merzbacher Disease (PMD) and gene-linked disorders.

The object of the CIO is the promotion and protection of good health among people suffering from Pelizaeus-Merzbacher Disease (PMD) and gene-linked disorders known as the leukodystrophies, characterised by myelin sheath abnormalities, in particular but not exclusively by providing information, advice, practical support and grants of financial assistance to such people and their families and carers

. Tomas has Pelizaeus Merzbacher Disease. It's a rare genetic condition where the fatty tissue of his brain didn't grow. PMD can affect vision, hearing, communication, motor skills and intellectual ability. PMD can also cause those with the extreme form to die before they reach adolescence. Triumph for Tomas Registered Charity Number 1166810

18/05/2025

Being a medical parent demands relentless energy, emotional strength and unwavering commitment.

But it also comes with a kind of exhaustion that many people don’t fully understand.

The kind of tired that no amount of sleep could ever fix.

We give every ounce of ourselves. 24/7 - 7 days a week. No holidays. No days off.

The mental load of constant medical decisions, appointments and advocacy. The physical exhaustion of sleep deprivation, lifting, assisting and always being “on”. The emotional fatigue of holding space for your child’s needs, managing your own feelings and navigating the isolation that can come with this journey.

It’s okay to acknowledge how hard this is.

How this exhaustion is something that you feel deep within your bones.

It doesn’t mean you love any less.
It doesn’t mean you care any less.

It means you are human.

You deserve rest, support and moments to refill your own cup.

If no one has reminded you today: you are doing an incredible job, even when it feels impossible.

To all the medical parents – your strength is immeasurable, but you shouldn’t have to be strong alone.

You are seen, you are valued and you are never alone in this.

04/04/2025

To the Parent of a Medically Complex Child

You live in a world most people can’t imagine.
Where milestones look different.
Where schedules revolve around specialists, therapies, and appointments.
Where joy is measured in progress charts and quiet victories—ones the world might miss, but you never will.

You’ve learned how to speak medical language like it’s your second tongue.
You’ve stayed awake in hospital chairs, memorized medication dosages, and fought battles no parent should ever have to fight.

And you do it all with love.
With strength.
With a kind of bravery that doesn’t shout, but shows up—every single day.

It’s not the parenting journey you pictured.
And some days it’s lonely.
Because while others celebrate first steps and soccer goals,
you’re celebrating the moment they made it through the day without pain.

And sometimes you grieve.
Not because you love your child any less—
but because your life became one you never prepared for.

But you are not alone.

There’s a quiet army of parents just like you—
carrying clipboards and heartache.
Smiling through exhaustion.
Loving their babies harder than anyone could ever understand.

You are doing sacred work.

And your child?
They are not broken.
They are strong.
They are beautiful.
They are deeply, fiercely loved.

Because they have you.

Address

Chatham
ME57PD

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