Joshua and Olivia's Journey
A difficult journey begins
“My little boy and girl have been through so much in their short lives. I am so happy, though, that they have experienced compassionate and transformative care in services in both Children’s Health Ireland (CHI) at Crumlin and Temple Street, which has given them the very best chance to grow, stay healthy and thrive.”
– Laura, Joshua and Olivia’s Mam
My son Joshua was born in 2014 with an unknown genetic condition. He was born extremely small and as the days and weeks went on, he just wouldn’t grow or put on any weight.
When he was five-months-old, we were sent over to CHI at Temple Street for tests. They did every test they could, across the whole range of paediatrics, with no results.
As a parent of an undiagnosed child, you have no one to compare them to and you have no idea what the future holds for them. It was a very daunting time.
From the age of one, Joshua struggled even more and was constantly being admitted to CHI at Temple Street with illnesses. He was so small, and so vulnerable.
Life becomes hectic
Before COVID came into all our lives in 2020, we were well used to isolating because it was so dangerous for him to get sick, and even the slightest illness would land us in hospital for weeks.
I cannot tell you how helpless we felt, and we still didn’t have any answers.
Two years later, in 2016, our daughter Olivia was born, and seemed to have the same condition.
So tiny and defenceless, they both became seriously-ill and were hospitalised many times over the years while the healthcare teams would do their best to help Olivia and Joshua recover and to discover the reason why this was happening.
Our life at this time was hectic. It was chaos – that’s really the only way I can describe it. I had to give up my business in order to look after Joshua and Olivia, so my husband could continue to work.
You see, when one child would get sick, the other would too. We were in and out of hospital constantly and would spend about four months of each year in CHI at Temple Street. It was like our second home and the staff, our second family.
Diagnosis
In 2018 after further DNA testing, we finally had an answer, after almost giving up on getting one. Joshua was aged four and Olivia, aged two. Their diagnosis was an entirely new one – it hadn’t even been named before. This is why it had taken so long to get to this point.
Both of my children have a rare form of dwarfism – they are two of only ten people in the world with this condition. I cannot tell you the relief that we felt to have a diagnosis. As rare as their condition is, we finally had an answer and could look at how other children had been affected.
Life-changing treatment in CHI at Crumlin
And at this time, we learnt about an immunotherapy treatment in CHI at Crumlin which might help, as both children were still continuously ill.
From this point on, Joshua and Olivia started to attend CHI at Crumlin for an immunoglobulin infusion. They continue to go every three weeks for this treatment, and you cannot even imagine how life-changing it’s been. They’ve been on this treatment for over two years now and each been hospitalised only twice during this time, while they were in hospital constantly before. It has absolutely changed our lives for the better.
The difference you make
We’ve had some very scary moments over the years, with the children being so sick. But the staff in the hospitals are just incredible. It’s like being amongst the most supportive of friends. They’ve been amazing to us, always there for a hug or cup of tea. From the consultants to the nurses, to the doctors, to the cleaning staff and the cafeteria staff, there’s just an atmosphere of utter kindness.
And when I felt that the long days were dragging on, the music therapists, therapy dogs or a care assistant with a little gift would appear and would really brighten our day. As a parent, these distractions are so appreciated, and I know that your kindness is what makes these supports possible.
Please know that they make all the difference.
Even though we don’t live too far from CHI at Temple Street, we would have been lost without the parents’ accommodation there. The care assistants and nurses were always brilliant at giving us breaks, because often I would be in the hospital with the children on my own, for very long days and just having somewhere to go to take a break, when you had the opportunity, was essential. They would spoil the children too, bringing all the toys down from the playroom! I always felt that they loved the kids, they weren’t just looking after them, I felt that they genuinely loved the kids.
It makes it so much easier having your child in hospital, when you feel that the people caring for them really think the world of them.
I can’t tell you how amazing it feels to have come this far. Thanks to the incredible care teams in both CHI at Temple Street and CHI at Crumlin, and in no small part thanks to the kindness and support of people like you, both Joshua and Olivia are now thriving. As well as attending CHI at Crumlin for their regular infusions, they have their outpatient check-ups in CHI at Temple Street, but otherwise their medications can now be given at home.
Loving care in CHI at Temple Street
Both Joshua and Olivia underwent a number of medical procedures over the years, having numerous MRIs and ports put in because they would get so ill. The focus was on caring for and supporting them so that they were safe.
And every year without fail Olivia and Joshua would get sick and we would spend December in hospital, hoping that we could be home in time for Christmas.
I’ve seen first-hand how tirelessly the healthcare teams work and it’s thanks to supporters like you they have access to world-class equipment and research that helps them provide the cutting-edge, treatment and care that seriously-ill children like Joshua and Olivia need.
Joshua and Olivia now
Joshua and Olivia are balls of energy with big personalities
As a parent of seriously-ill children, you learn to appreciate the milestones so much more. For a long time, we just didn’t know if Joshua or Olivia would make it to any of them. Now every six months there’s another huge development, and they are both running around, and they never stop talking!
Joshua and Olivia are two of the smallest children on the planet, but with gigantic personalities! Joshua loves to dress up as a ninja and Olivia loves pretending to be a doctor. They’re the best of pals. They’ve been through so much together so they’re just inseparable.
Your support has ensured that our family can celebrate these precious milestones and that Joshua and Olivia will continue to thrive.
They are both at an age now where Christmas is really magical, and we are all really looking forward to it this year.
After all those years of spending time in the lead up to Christmas in hospital, we’re just looking forward to all being home together as a family. We no longer have that same fear of them being sick or having to worry as much.
The care and treatment across CHI at Temple Street and CHI at Crumlin has changed our lives.
Sick children need your help right now
Right now, in CHI hospitals and urgent care centres across Ireland, there are tiny babies and children, just like Joshua and Olivia, on the toughest of journeys. They need your support so that the incredible care teams continue to have access to the world-class equipment and research that their little patients need to have the very best chance to get better and come home.
I know well just how your support, your kindness and care, makes all the difference to the patients and their families in CHI hospitals and urgent care centres. Thank you.”
-Laura, mammy to Joshua and Olivia.
With your support we will continue to do whatever it takes for children like Joshua and Olivia. Will you give a special Christmas gift today to help give seriously-ill children like Joshua and Olivia the hope of many more precious milestones and Christmases to come?