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Colson had Hundreds of Seizures a Day Until His Surgery at RCH

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Colson had Hundreds of Seizures a Day Until His Surgery at RCH

Colson started having seizures just days after he turned 6 months old, and we spent a week in 2 previous hospitals before coming to RCH where they had a diagnosis for us within 12 hours… Focal Epilepsy and Focal Cortical Dysplasia(located in the Left Occipital Lobe).

We were heartbroken, we didn’t know what this meant or where we would go from here, but our team at RCH answered each question and guided us every step of the way and they still are to this day.


Colson began having hundreds of seizures a day, we tried countless medications to try control the seizures but they didn’t work and we knew he would have to have brain surgery at some point if we couldn’t control them, it was our last option.
We had a good few months with no seizures, then at the end of January 2022 they returned, back to the hundreds a day and taking a toll on his quality of life. Even though he seemed like such a happy bubbly baby he was very miserable, but he still powered through. We knew a surgery date was approaching, it was just a matter of when it would happen – next week, next month.

His surgery was a Corticectomy, Crainiotomy and insertion of intracranial Electrodes, and an Intraoperative Electrocorticography

They had to remove the Dysplasia which was located in His left occipital lobe- the part that controls your eyes/eyesight. So they had to remove part of his occipital lobe, which would in turn affect his eye sight but only very slightly.
His surgery happened on the 5th of April, he underwent hours and hours on the table. His surgery went unbelievably well, they didn’t have to remove as much as they thought and he is recovering so so so well. He is still having some seizures every few days but no where near as many as he was.

RCH has gone above and beyond for us every single time we have been there, we can’t thank them enough. We are forever in debt to them.

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Alice’s Parents “Lucky to have RCH” in “Lonely and Scary Time”

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Alice’s Parents “Lucky to have RCH” in “Lonely and Scary Time”

When Alice was just 7 days old she stopped keeping her feeds down and was hard to wake.

We took her to RCH emergency and she was admitted to NICU that night as they tried to diagnose her. Only one of us could stay with her due to Covid restrictions, and I had to learn to pump for the first time in the NICU machines provided.

The next day a scan indicated she had malrotation of the gut and the surgery was almost done.
She spent another week recovering in NICU, slowly working her way back from TPN to breastfeeding. We couldn’t say overnight or visit at the same time so my husband and I visited in shifts during lockdown.

It was a lonely and scary time but we are so lucky we have the RCH. We are so in awe and so grateful for the work of all the staff, particularly the butterfly ward staff. The NICU nurses were actual angels and looked after us as well as the baby. They also answered all our many questions, not just about Alicss surgery, but how to look after a newborn for the first time! Alice is a thriving bossy toddler now and we count our blessings every day!

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Ellery’s Parents “Eternally Grateful” to RCH

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Ellery’s Parents “Eternally Grateful” to RCH

The day adorable little Ellery was born she was not responsive and subsequently suffered a cardiac arrest. She was immediately taken away from her parents while they began resuscitating her. “The image of holding her so peacefully in our arms as we did with our firstborn abruptly ended, but I knew we had much more important and serious things to worry about,” her father Mario, notes.

Later that evening, Ellery was immediately brought into the Rosella Ward (PICU) at The Royal Children’s Hospital where she spent the first 16 days with an open chest cavity to cannulate ECMO into her heart, while the cardiologist monitors her heart function, as well as giving the heart, lungs and other organs time to recover.

It was suspected then that she had a condition called “hypertrophic cardiomyopathy” and unfortunately, Ellery and her family needed to wait on her recovery to determine the next step.

The uncertainty was met with another blow, when the team failed to wean her off ECMO as her heart muscle still could not cope by itself and continued to depend on ECMO support. Shortly after, a team from genetic testing carried out an expedited test which would help the specialists and her family understand and decide if continued support could be given to Ellery.

Their prayers were answered when the test came back negative, which meant that for the time being with all the data that was available, they could not determine if hyperthropic cardiomyopathy is what Ellery’s heart underlying condition was. Ellery then had her chest closed & ECMO moved to peripheral for further support. “Our little fighter continues to show us what’s possible! Slowly but surely we see her heart function improves and she eventually was able to wean off ECMO completely.”

After spending a total of 2 months at the RCH, Ellery finally made it home with her family. Ellery’s journey with RCH continues to this day with her outpatients’ appointments, tests & therapies but she is thriving!

“RCH & their team have been monumental in Ellery’s care and a huge part of her life.
We want to express our utmost gratitude from the bottom of our hearts to those that have cared for Ellery that it is nearly impossible to mention one by one, but each of you are so special in looking after not just Ellery and our family, but also every other child and their family as they go through a very difficult time. We are eternally grateful. Thank you!!” her family expressed.

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Heidi has “Aspirations of Being a Doctor” After RCH Stay

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Heidi has “Aspirations of Being a Doctor” After RCH Stay

Heidi lives over 3 hours away from RCH and stayed there in January 2021. It was scary, Heidi was losing weight very fast. Our small-town GP sent us to the RCH for help and when we got there we knew we had made the right decision. Heidi had a lot of tests done and spoke to a lot of people but her stay was relieved when music therapy and art therapy came and spent some time with her… oh and let’s not forget the clowns, they all helped take her mind off where she was just for a little bit.
Heidi is cutting her gorgeous long golden locks and donating them so they can be made into a wig as well as that she has rallied her community to donate money to the RCH Good Friday appeal so that she can say “thanks for caring for me when I needed you”.
Heidi is a 7-year-old champion of lots of things, she now thrives at school and at dancing and has great aspirations of being a doctor “who does ballet on the weekends”. Heidi often thinks of others before she does anything and loves a laugh with her 4 siblings as often as she can.
Heidi has a really long her and she is very proud of it and wears it so well as a result Heidi has never had a haircut… not once! Heidi has grown her hair long enough so that when she has her haircut, she still has enough for her ballet bun.
Your family is so proud of you Heidi!
Please help Heidi reach her goal to say “thanks for my stay”.

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Polly’s Parents “So Lucky” to have the RCH

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Polly’s Parents “So Lucky” to have the RCH

Polly first came to the RCH in August 2020. I brought her in after our local hospital discovered Polly was significantly delayed in her development. I remember the kindness of the Emergency Doctors who listened to our story and then set us up with ongoing care.
Polly has been an Orthopaedic Patient and Neurology Patient ever since.
Recently through the Neurogenetics Team Polly has been diagnosed with a rare genetic disorder called Congenital Myasthenia. We are in the very early stages of learning what this means for Polly long term.
We are so grateful for the kindness, care, and commitment of the RCH teams. From ECGs, X-Rays, Prosthesis, and Admission to the Cockatoo ward the staff are always lovely and do everything they can for you. We are so lucky to have this hospital in our city!

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Lacey and Holly’s Mum Will “Never Forget” the RCH

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Lacey and Holly’s Mum Will “Never Forget” the RCH

This is the story of both my daughters Lacey & Holly Hamlyn.

Lacey our first was born on the 20th of January 2020, we were delighted but soon found something wasn’t quite right.

Lacey was flown to the RCH at 24 hours old & we followed by a car as there was no room in the helicopter, we are regional so it took us 2.5 hours to drive down.

When we arrived I remember thinking “Oh my this place is huge” as we made our way to the Butterfly Ward, little did I know this would soon be my second home not once but twice in two years.

Lacey was born with a rare genetic condition called Pierre Robin Sequence or PRS.
PRS meant she had a small jaw that pushed her tongue backward blocking her airway & a cleft palate (missing the roof of her mouth.)
All of this had been totally missed while I was pregnant.

Lacey’s first surgery was at 6 weeks old she had her jaw broken on both sides & grown out over 9 days by slowly moving it forward, this opened up her airway.
For about 7 of those 9 days she laid motionless on a ventilator & time seemed to pass by in slow motion as we spent every second we could by her side.
It was all worth it seeing her breathe on her own after 9 days.

All up our stay on Butterfly was just over 50 days long.

Lacey’s second surgery was to remove the plates holding her jaw together at 5 mths old & then our third & final surgery in August 2021 at 18 months was to repair the roof of her mouth & put grommets in her ears.

Surprisingly enough your palate controls the fluid level in your ears so Lacey had to wear a hearing device until she was 18mths old to be able to hear & the grommets fixed this problem, feeding was another huge problem we faced due to her not being able to suck on a bottle & solids would quiet often come out her nose.

Now 2021 I find out I’m pregnant again & due in September about 5 weeks after Lacey’s final surgery.
At my 12 week scan there she was a beautiful baby BUT her jaw looked suspiciously pushed back & my 20-week scan confirmed again we would be calling the RCH Butterfly Ward home again. Although we were excited my husband & I knew the uphill battle that lay in front of us, a battle we thought we had just put behind us.

9th of September 2021 just a few weeks after Lacey’s last big surgery we welcomed Holly & back to Butterfly we went.

Holly needed the same surgery as Lacey did & being the second time around didn’t make it any easier, the risks are the same & a toddler now in the mix added a new degree of difficulty as parents.

I was delighted to see all our beautiful old nurses & doctors on the ward, of course, they were stunned to see us but it really felt like coming home & their support was second to none.
It also gave me the chance to show them all photos of Lacey because of covid we hadn’t taken her back to the ward to visit.

Holly followed the same path as Lacey having her surgery at 6 weeks of age although with a little more excitement having an earthquake this time happen while on the ward.
Again we spent another 50 plus days on Butterfly before being allowed home.

Holly has now had her second surgery to remove the plates in January 2022 & we are waiting till 18 months for her final surgery to fix the roof of her mouth & grommets for her hearing.

This hospital I owe so much to & will never be able to put into words my appreciation.

Both my girls are a credit to the hard-working nurses & doctors. I will never forget each & every one of them & my girls will grow up knowing the names of those who worked so hard to give them a normal life.

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Mackenzie “Forever Grateful” for the Support of the RCH

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Mackenzie “Forever Grateful” for the Support of the RCH

Since I began primary school I had been involved in a research study with the Murdoch Children’s Research Institute investigating brain development. In 2015 when I was 10, the institute got funding for MRIs at the RCH, which I willingly took part in!

Through these scans, we found that I had an arachnoid cyst centered in my brain. At the time, we had no idea what it meant, and when Mum told me, all I could care about was eating the cookies sitting on the bench next to me.

About 6 months to a year later, I suddenly began experiencing nonstop headaches, elevating during any form of physical activity. Due to this, we reached out to my neurosurgeon who decided to investigate further. In 2017 I received my first brain surgery in hopes of alleviating the pain, and although successful for a month, the pain soon came back. We then decided to just monitor the cyst to see for any growth.

With my symptoms not getting better, and scans showing no size difference, it was decided in 2020 that I would undergo another surgery to place an ICP monitor in my brain for a few days, and then take it out to see if the cyst was causing any pressure (and therefore pain). This showed that the cyst was likely not the cause, meaning that I was once again left with no answers. I began seeing the RCH pain clinic, being discharged from the clinic in late 2021.

Now, 7 years later, I’m currently still seeing an array of specialist clinics within the hospital, and will be forever grateful for all of the support they have provided my family and I, especially whilst being admitted to the hospital during heavy covid visitor restrictions!

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RCH Saves Mia’s Life

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RCH Saves Mia’s Life

Mia was diagnosed with a rare cancer called “Adrenal Cortical Carcinoma” 10cm at the age of 13 months. She was put on life support and we were all told to say goodbye. Mia decided it wasn’t her time yet! We flew to RCH from QLD’s children’s hospital to do the treatments and surgery. She completed 6 rounds of chemotherapy and now is a healthy 4 1/2-year-old and it’s been 3 years in remission.

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RCH A Part of Josephine’s Life for 2 Years

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RCH A Part of Josephine’s Life for 2 Years

The Royal Children’s Hospital has been a part of my daughter’s 2 years of life, from the emergency when we went in last year to check for an ear infection but instead found a tumour the size of a tennis ball in Josephine’s brain, that was life-threatening. The neurosurgeon and their team were quick to look at the problem, safe removal, and no side effects for our baby. Very grateful for the service The Royal Children’s offers for all kids!

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Natalie Gives Back the Gift of Life

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Natalie Gives Back the Gift of Life

I was a patient at the RCH from when I was 1 month old, until I was 18 years of age. I had multiple long stays and experiences left kidney failure as well as multiple other complications and operations in regards to this.

My Mum, Dad, Sister, and Brother always tell me they remember not being able to pick me up as I was completely covered with tubes and some days was so sick I could barely open my eyes. As I got older I got to know all the Nurses and regular patients in the ward. We were like a family and I remember asking for one of my friends one morning and to be told they were an angel in heaven. I asked my Mum when will I be an angel in heaven. It just seemed like the thing to ask when that’s all you know and see growing up.

I remember spending most of my childhood in the ward doing homework and random weekends driving in to get IV treatment.
The hospital is amazing and they literally saved my life more than once.
I am a nurse today and although I still battle with my health I enjoy nothing more than being able to help others and give back the gift of life I have been given.

I have been volunteering at the Good Friday Appeal for the past 13 years in the phone rooms and I love volunteering my time to such a great cause so close to my heart.

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