Milestone Day for Riley’s little sister

Milestone days are always the toughest and yesterday was emotionally challenging. We took this little superhero to go and get her 6 month vaccinations. She was a gem, we had no complications and we can now say she’s made it through a particularly fragile time of her life.

What hurts is that these are needles her brother should’ve lived to see, this is protection he should’ve already received and this is now a time where we should be planning and preparing for his 2nd Birthday a little over two weeks from now. Instead we’re a family that no matter how hard we try, will forever be left with an enormous hole that can never be filled.

This next 2 month window is tinged with sadness at a time where we should be celebrating. Riley’s birthday, our wedding anniversary, and Catherine’s birthday all fall within such a short period of time. The fact that Riley’s passing falls smack bang in the middle of it all means each one of these occasions is now bittersweet.

We’re a family who has felt the impact of vaccine preventable disease and it changes the fabric of how you live your life. Get your maternal booster, make sure your children follow the childhood immunisation schedule and avoid the bittersweet days.

Trust me, they’re not fun.

-Riley’s Dad

Catherine Hughes Nominated for Women of the Future Award

Last year Australia embraced and supported Catherine and Greg Hughes as they mourned the loss of their baby boy Riley.  Riley contracted whooping cough and despite the hospital staffs best efforts and Riley’s fight, he passed away at 32 days old from the disease.

In tribute to their son Riley and in testament to their strength, Greg and Catherine set up the Light for Riley campaign to share their story and more importantly, raise awareness to the importance of immunisation in children and adults alike.

Their determination paid off with meetings with ministers, health officials and the support of a nation. In addition to the No Jab No Pay legislation being introduced shortly after Riley’s passing, Catherine has raised over $75,000 for research and donated over 100,000 vaccines.

In addition to being a truly amazing woman, we congratulate Catherine on making the semi-finalist of the 2016 Australian Women’s Weekly Women of the Future Award.

We encourage you to vote for this incredible individual who has been a role model to us all that in the face of adversity and personal tragedy, greatness can come.

Watch Catherine’s video here

 

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Sydney Pregnancy, Babies and Children’s Expo

Our message of immunisation to protect babies and expectant mother’s continues this weekend as our Light For Riley stand takes prime position at the Sydney Pregnancy Babies and Children’s Expo.  The stand will be attended to by our amazing volunteers who will be handing out free immunisation information packs to all attendees.

We welcome you to come and have a chat as we work towards educating expectant and new parents on the importance of immunisation. We look forward to seeing you there!

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A Letter to Riley – one year on.

Dear Riley,

Today it has been one year since we held you as you left this world, and left a huge un-repairable hole in our hearts.

We whispered promises to you which we have tried to keep. All the time we would have spent cuddling you has been channeled into trying to sure this doesn’t happen to other undeserving babies and children. We are so sorry it happened to you. It has been a hard year for us.

You have been loved by more people than you ever got to meet. Your sister talks about you all the time, she loved being your big sister, even if it was just for a short time. She loved you so much she even was excited to help change your nappies – that is love, coming from a three year old!

We’ve been replaying in our heads over and over those last few days and hours with you. Even though you died sleeping, Our greatest hope is that you could feel our love and hugs and cuddles as you left us. I hope you heard the lullaby we sang as you drifted away from us.

We can’t believe it’s been a year. We can’t believe we’ve survived. If we could hit rewind, we would have done it a long time ago.

We love you so much.

xxx Mummy & Daddy

A Mother’s Plea – Light For Riley

A year ago I was sitting there helpless next to Riley and decided to put this plea up on my Facebook, urging friends and family to have a whooping cough vaccination.

“If you haven’t been immunised against whooping cough (pertussis) please consider getting it done. Heartbreaking to watch 4 week old Riley struggle with it at PMH please keep him in your thoughts!

I remember this day clearly. We had just been moved to a room right near the nurses desk because they wanted to keep a closer eye on him. While we still hadn’t received the swab results yet, his doctor was convinced he had whooping cough. We were told to be prepared to stay in hospital for a long time, possibly weeks or even months. I remember (stupidly) feeling so much positivity. I never entertained the thought that he wouldn’t make it. My brain refused to go there. He was having a tough time but he was going to get better. That was the only thought running through my mind. It wasn’t until he was moved to ICU the next day that I started to feel seriously worried.

Wish I had cuddled him more when he was in hospital.

Catherine Hughes.

baby booties

Dad’s Perspective on Grief – Greg Hughes

I found this photo while I was shuffling through our folders and even when Rileybear was still brand new you could see the incredible amount of love our daughter possessed for him.

Our little girl has had to do so much growing up in the past 12 months and for me it’s been the most difficult aspect of our grieving process. As ridiculous as it might sound, I’d never actually seen my daughter cry purely because her feelings were hurt. Sure, she’d grizzle over not getting her own way, but the first time I heard weeping and I walked into her room to find her sobbing saying ‘I miss my little man’ almost ended me.

She’s had to learn to cope with the enormity of loss at a far earlier age than I would’ve liked and it’s something that I think will always remain, even subconsciously, as part of her identity. Thankfully, we’ve had so many generous people who have donated Teddies, Photo Albums and other little items that she cherishes and which constantly remind her of her brother.

These days she seems to be coping quite well. She’s ecstatic that she’s getting the opportunity to be a big sister again and she finds solace in sending her brother letters via balloon each month to show him what she’s up to at school and how much she misses him. While she takes comfort in these actions I’ll keep encouraging it, as painful as it might be for me as a parent.

I think the most upsetting aspect of what we do is the extremely personal encounters with individuals who’ve lost a child or in some cases children. I’ve met Mums and Dads on our travels who’ve lost as many as 14 children and it’s a club that no parent wants to be a part of. From miscarriage, to still borns and children who were cruelly taken far too soon, no parent nor family should ever have to endure the heartache associated with the loss of a child.

For those of you who’ve only recently experienced this awful circumstance, I implore you to seek support. You’re not alone, you shouldn’t have to deal with this by yourself and unfortunately there’s too many of us who’ve experienced similar paths to yourself and have walked the same journey you’re about to travel.

Grief left unchecked has the ability to tear families apart and ruin lives, and it’s for this reason that I post this – to remind those of you who’ve experienced the cruellest loss of all, that you’re not to blame. You should never be shamed for grieving your child and there’s no ‘timeframe’ to ‘get over it’. This is a lifelong scar that may fade, but never disappears completely and can be reopened at the most inopportune times.

I’d love to hear from those of you brave enough to share your stories. I truly think you’re incredible.

To the bereaved Mums, Dads, Sisters, Brothers, Grandparents, Guardians and all those in between – I salute you.

-Riley’s Dad

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Riley’s Story – Whooping cough

Riley Hughes was born a gorgeous and healthy baby boy on February 13th, 2015. He was our second child and we were so delighted to have him in our family.

At three weeks of age, he started displaying mild cold-like symptoms, and developed an occasional cough. We called out a locum, who assured us he was fine. However instincts took over, and after a night where he slept a lot and barely woke for his usual two-hourly breastfeed, we knew something wasn’t right. We took him straight to our local children’s hospital, Princess Margaret Hospital in Perth, Western Australia.

Riley was admitted that afternoon, and at first it was thought he had bronchiolitis. Pretty quickly, the doctors suspected pertussis (whooping cough) and began treating him for it. On the 4th day of his hospital stay, he was taken to PICU with pneumonia, and his swab tests confirmed he did indeed have whooping cough. He grew steadily worse and worse, and despite all the best medical intervention, Riley passed away in our arms the next afternoon, at just 32 days old.

While Riley was dying in hospital, we discovered that women in the UK, USA, Belgium and New Zealand were being recommended a whooping cough vaccine in their third trimester. This vaccine, usually given between 28-32 weeks gestation, provides the unborn baby with the necessary antibodies to protect them from this terrible disease. Since the introduction of this pregnancy vaccine, the UK has seen a reduction in infant deaths from pertussis by over 90%.

Two days after Riley’s death, our state government announced the introduction of a program where these third trimester booster shots would be offered free of charge to pregnant women. Other states soon followed, and now all states and territories in Australia have free whooping cough booster shots for pregnant women.
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Little Riley

Our Light For Riley