Help Nazàrio’s get his specialist equipment

I watched your tiny body turn from pink to blue, from breathing on your own to nasal specs,

an then a breathing tube.

So blissfully unaware of the chaos going on,

an extremely dramatic entrance into the world, my son.

The days were long but I longed for you harder,

as your dad held my hand and we prayed to the lord our farther.

Hours turned into days and days turned into weeks,

yet every minute of every day I was consumed by the machines and all of the beeps.

Coming home was the hardest part leaving you there,

left a Nazàrio shaped whole in my heart.

that somedays we’re just to hard to bare

After a two week stay on NICU we stepped down to special care,

such a milestone in your journey we thought we were almost there.

But You know NICU is a journey,

your told from the start but nothing could ever prepare you for the pain in your heart.

He’s back in intensive care it’s best you come in, I’m sorry mum and dad but he’s got an infection again.

MRI’s, ECG’s, bloods, antibiotic’s and scans

Looking up at the sky screaming this wasn’t in our plans.

A dated letter signed by the NHS we’re sorry we did this but it’s now out of our hands,

the damage is irreparable so sorry mum and dad.

Just shy of 42 weeks of growing you, knowing you for that all to be gone and not because it was in gods plans but because people didn’t do there job!

59 days after you were born you were healthy enough to come home, after so much loss and feeling robbed,

we had you were you should have been two months ago.

Life’s tough but you are tougher, we take each day as it comes one step after another.

Your smile lights up the room and honestly I’ve never met a person brighter then you.

Nazario is almost 14 months old, he has H.I.E (severe brain damage) he’s suffers daily with dystonia and mylonic jerks and managing his secretions. He’s never been able to feed orally and is currently awaiting his peg surgery. He has low tone and he’s still unable to hold his head. He has laryngeal myxoma and is awaiting surgery to remove this. I know my son will have a shorted life but I want that to be comfortable in every way possible he deserves to see the world sitting up right this is the last time I will stay silent at the failings of the NHS.

My son would never have had brain damage if you’d have done your jobs correctly, and now you cannot even seat him adequately. You’d think you’d be making emends we’re ever reparable instead it’s the opposite you are stopping his progression and the only person that feels the brunt force of this is my son. I will not stay quite any longer.

And that’s why we need your help! Our baby boy has yet again been let down by the NHS system and has been refused a wheelchair/sitting aid and the appropriate bathing seating. We’ve been disputing this since November 2024. It’s been to panel 4 times and every time has been declined, we have no other choice but to ask for your help and even if you can’t donate as I understand times are hard right now if you could just read our story and share it I’d be so greatly appreciated♥️

Thank you so much, for taking the time out of your day to read this. Please if you can donate do and if not please just share this to get our story out there

Love Nazàrio’s mummy and daddy xx