Tell us your story

We would love to hear your story or a story of someone you know whose life has been touched by The Royal Children’s Hospital. You may be a patient, staff member, family member or friend of a patient. You may be a fundraiser sharing how your community is getting involved.

Scroll through the stories to hear what The Royal Children’s Hospital means to people from all over Australia.

Hi my name is Aria, and I was born with Pierre Robin Sequence (PRS). This means that I was born with a small jaw, and a cleft palate that impacted my ability to eat properly, and also to breathe. Things were pretty scary for a while; I had to have surgery on my jaw to help it move forward so that I wouldn't choke on my tongue, among with other treatments for my hips and feet, to realign them. Things have been successful so far, but unfortunately I suffered a stroke while I was under anaesthetic, and suddenly things were scary again. Mummy says I am a fighter, and thats good because together we have a “long road” ahead of us.  Not many people know what PRS is, but that’s why my mum is participating In the 2017 Kids Run - to help raise awareness for this condition, and also help raise some money for the Royal Children’s Hospital, to say thank you for all the wonderful support they have shown our family. Not only have they helped with my treatments and care, but through the Ronald McDonald House they have also helped my family with being able to stay close by to me so that I’m not alone when I have to stay at the hospital. It can be scary here with so many unfamiliar faces and sounds.  Love Aria Harris My baby girl was born with transposition of the great arteries which is a congenital heart defect!  She faught so hard along with the doctors that faught just as hard she had open heart surgery at 1 week but unfortunately after fighting for just 3 weeks old she couldn't fight anymore!  The nurses and doctors on rosella ward are the most beautiful people I have ever met!  The hospital itself is the most amazing thing for such terrible circumstances!  I will forever thank the royal children's hospital for giving me 3 weeks with my baby girl.  Because if we didn't have the wonderful nurses and doctors I wouldn't of gotten much time with her at all! Chaz spent the first 6 months of his life in RCH in 2014. Chaz was born with 2 rare genetic condtion. (Nethertons syndrome and jeunes syndrom) at the time no one knew what was going on with Chaz. We lost count of the amount of ng tube, iv lines and blood test chaz had in this time. Chaz was tube fed up until he was about 2.5years due to failure to thrive, chaz stil struggles with his weight and is on a high calorie diet. Chaz spent time on the butterfly, sugar gliders and one week in rosella wards during this time. When we walked through the doors to the Butterfly Ward I felt the weight lifted from our shoulders as we knew chaz was in the best place to get better. Part of chaz nethertons syndrome leaves his skin red scaley and peels every day. People often look and ask if chaz is sunburnt. Chaz has constent creams and daily salt and bleach baths. During Chaz time in RCH he definitely kept the doctors and nurse on their toes. We are so thankful for all the teams, specialist and nurses that helped get our little man home to Ballarat. Chaz is our one in a million. He is such a cheeky little man now you would never know we had such a struggle the first 6 months of his life. I was first admitted to the Royal Childrens Hospital on March 10 1972 aged 2 with 3rd degree burns. I continued treatment at RCH 9west followed by years of plastic surgery at 4 nth. My last surgery I was 21 spending time at 4 nth then 9 west. I remember very special staff at the hospital- a ward clerk Trudi at 4 north and a very special Sister Wendy Swift. There is no doubt the RCH and their staff save my life. In 2005 we began fundraising in Erica with Bikes at the Pub we raised about $10,000 over 3 years..  After a living away for a few years we returned to Erica where we began Bikes R Back event held Good Friday with the last two totalling close to $17,000. We are building up to this years event . Our way of saying thanks to such a wonderful Hospital My son Jyson was 6 weeks old when he was transferred to Royal Children's Hospital with a rare heart condition. My partner and I being first time parents were so scared watching your 6 week old go through everything he did and watching him nearly die on numerous occasions is the worst feeling! Rch staff made our experience so much easier they allowed us to travel from home to the hospital at night and get some sleep they took care of our son and called the second something happened every procedure was a little easier with the amazing staff members. My son is now nearly 2 and we have his condition under control he is strong energetic and happy. I owe everything to the staff at rch and the community for donating you are saving hundreds of children. Lara has been attending the Royal Children's Hospital for the past three years. At the age of two Lara had her first seizure on her first family holiday to Phillip Island. This seizure lasted for over 6 minutes. Lara was taken via ambulance to the Royal Children's Hospital that night. Weeks later she had an eeg that came back abnormal and was scheduled for an MRI. Her MRI indicated that Lara had a form of epilepsy. She was prescribed Keppra and we began a seizure journal. Lara was still having seizures. Our neurologist prescribed a different medication. We continued the pattern of trying various medications and following up constantly with eegs. However from the pattern that was emerging we began to learn that Lara had csws. She had continuous spike waves during sleep. We were told that Lara possibly has a rare form of epilepsy. As we continued to trial medications Lara began to regress in July 2016. She began to have negative myoclonus. Her head would drop and her hand would drop. She was beginning to lose control of her fine motor skills. She was struggling to hold a pencil and colour in. She was finding it difficult to feed herself. We began to try steroid treatment every month on top of her epilepsy medications. In October 2016 Lara woke one day and was unable to walk with out dropping. She would take a couple of steps and stumble. Our wonderful neurologist Dr Eunice Chan told us to come to the hospital immediately. She informed us that Lara had ataxia on top of the regression with her epilepsy. She told us she wanted to try IVIG treatment and to change some of Lara's medications. Lara was experiencing 8 seizures over 2 days. Her head was constantly dropping. She was unable to support herself. We had to help her with the simple tasks a 5 year old can do for themselves. She was experiencing absent seizures which she had never experienced before. Over those next few weeks we prepared for a life where we could cater and manage Lara and her special needs. Three weeks after our first IVIG treatment we took Lara outside to get some exercise and use her muscles. She surprised us and was walking without dropping. Bit by bit she was improving. Her negative myoclonus had disappeared. The ataxia had disappeared. Her seizures had disappeared. Today Lara is on 6 tablets a day. Zarontin, Frisium and Epilium. She also goes to the Royal Children's Hospital every 5 weeks for two days to the Day Med Unit where she has IVIG treatment. Lara had been seizure free for 3 months. Unfortunately, two weeks ago she had a seizure. In the past few weeks there is evidence of her negative myoclouns and she has begun to drop at times again. Because of the rare form of epilepsy Lara has, she will on a rollercoaster. She will have good times and bad times. The Royal Children's Hospital has become a second home for us. Our neurologist Dr Eunice Chan has been one step ahead in Lara's treatment and we have been so fortunate to have her. The nurses in Day Med have been absolutely wonderful. We still have many years ahead with the Royal Children's Hospital and we couldn't be happier. Milla was born with a Congenital Heart Defect called Tetralogy of Fallot. She had a BT shunt placed at 2 months & her full repair at 11 months, both surgies done at RCH by the amazing Dr Yves D'Udekem In October 2016 Milla became unwell with fevers and vomiting. Our GP called an ambulance and she was rushed to RCH emergency. Within 25 mins she was transferred to ICU to be intubated. During preparation for intubation Milla went into cardiac arrest. The ICU team were able to quickly resuscitate her and she was placed onto an ECMO machine, which she stayed on for 5 days. This gave Milla's heart & lungs time to rest & recover, before they let her heart do the work on its own. We will be forever grateful for all the work the surgoens, doctors, & nursers did for our baby girl and we are so very thankful we have the RCH in our city. We are extremely lucky. It is for these reasons we will do everything we can do raise funds for the Good Friday Appeal. We have our own personal everyday hero page & sharing Milla's story with our friends and families and asking kindly for donations. I am also planning a Trivia night at my work, with all funds raised being donated to the Good Friday Appeal. We thank everyone single person that looked after our daughter. We had seen 2 x paediatricians and 2 GP's and our babies heart defects (VSD and ASD) were sadly never picked up. One day, I followed mummy intuition and drove an hour and a half with my 12 week old boy to Melbourne Royal children's emergency for another opinion. His only symptom: A baby failing to thrive. Sadly we were soon told our baby boy was in heart failure and would need life saving open heart surgery. Looking back I thought River was just a 'fussy' feeder, always pulling off crying, panting, sadly his body was running a marathon just to try and feed. He slept for hours at a time, but no one seemed concerned. Until I arrived late one Friday afternoon to emergency at the Royal Children's. They knew within in 10 minutes (even prior to having heart scans) something was wrong. He shouldn't be loosing weight, he shouldn't be breathing that fast etc.. Then we received the heartbreaking news from his cardiologist. They said if we had not come in that day, he wouldn't have survived much longer than a couple of weeks. Within 24 hours, River was given a feeding tube and admitted to the Cardiac ward (koala ward). This was home for the next couple of weeks. His surgery was a success and thankfully only spent 3 days in ICU. He is now home, with regular check ups for the next few years. We will be forever in debt to the Doctors, Surgeons & Nurses at RCH for saving our baby boys life. Hi my name Susan , mother of Shannon who had a life threatening heart condition and with out the RCH we would not have our precious little boy who is now 8 with us today. The diagnosis was very bad with not much hope until this amazing surgeon Christian Brizard was able to offer us life saving surgery. We are so grateful for the care and support that all the wonderful staff gave us. Shannon had 30% of his heart muscle removed due to cardiomyopathy and is doing amazingly well, we still don't know what the future holds but we are so grateful for all the best care that was given. We are so lucky to have this awsome hospital and every year we donate as much as we can through many different activities. Our darling Stella was born 2nd December 2016 at 27 weeks and 1 day weighing 985grams. she was doing very well until the 2 week mark when I (Mummy) found blood in her stools. As soon as I mentioned this the Drs at The Royal Womens Hospital knew what was to come. That night we received a call within hours to say to come in as our girl ia extremely unwell. When we came in Stella's tummy was black and distended. She had the awful infection. Babies can get very unwell very quick. Unfortunately Stella got so sick we were prepared to say our good byes... no medication was working for her. The next day she got so unwell she was seen by surgeon Liz McCleod at RCH at RWH. She was transported to the RCH that day. 6am the next day we were told they were operating on Stella in her room as she was so sick and not getting better. Again we prepared for the worst and held her hand and said good bye. Stella had her surgery and pulled through. We were taken into a room and told she had lost 70cm of bowel and was left with roughly 50cm. Loosing over half of her small bowel which did not look good for her. The surgeon said she don't know what the future would hold and if she could lead a normal life. again, we feared the worst but i knew as her mummy I had a fighter on board. Stella now had a stoma which meant she would poo through her bowel through her tummy. we held her hand, I sung and read to her most hours of the day. I knew she could do this. Stella was on a very high form of life support and heavily sedated. Our heart broke. Within days Stella was fed my milk through a tube and started tolerating milk well to our surprise we were told it was a very long road ahead and we were always told to take one day at a time which we did. Within a break Stella was taken around from NICU to HDU. Massive step, her lungs were pretty good which was a huge bonus. Stella was also on TPN (nutrition through an intervene needle) so she can put on weight to grow. We were kicking goals to everyone's surprise. Months passed and it was decided that Stella was healthy and strong enough to get her stoma reversed and hopefully they could join the bowel together internally and sew her together and finally poo properly. Surgery was booked and Stella went under again! The surgery was a success! Luckily for us no more bowel was removed as Stella couldn't afford for that to happen and fingers crossed we are informed the bowel can grow and adapt in young children. Stella was back in NICU and recovering when things took a turn for the worse. We were never prepared for what came next. Stella was in so much pain from her operation she was jumping in her bed which was very confronting for my husband and I. Our poor baby was in agony. They upped her pain medication and upped her oxygen but something wasn't makings sense. My poor baby was on 80% oxygen the highest she could go and she has never needed that much even when she was born and she was still struggling. A scan was ordered and her lung started to collapse. What next... all of the sudden Stella did not tolerate the nurses move her and stopped breathing. I could see the fear in the nurse and they couldn't get Stella breathing so they slammed the emergency button on her and everyone came running hubby and I were ushered outside as they worked on Stella. All I remember was seeing her turn blue. I was hysterical I thought she was dead! I've never seen my husband so scared. Luckily they managed to get Stella in a controllable state. Stella got better from then and started on milk through a tube. The wait for a poo was the anxious wait. Day 3 we had a poo and it was music to our ears. Success. Our girl can poo normally, feeds kept increasing and tolerated well. Our champ was on full feeds so TPN was taken off and she was fed through a tube and also a few breastfeed a day. The tube eventually came out and Stella was receiving feeds all by mouth. All the lines were taken out and our rainbow miracle made it to the other side. I never doubted her but golly gosh what hell not even a full term bubba has gone through . What a gem, a superstar, a strong little lady. Home time came around and here we are 4 weeks later enjoying life as a family of 4. We couldn't thank the RCH enough which includes the support and help of all the wonderful nurses, doctors, social workers, surgeons, volunteers, food staff, Ronald Mcdonald house and finally the starlight room. You made not only our scary journey that little bit more easier but you made our eldest daughter (Stella big sister Ava) stay and visits daily pleasurable. You are all amazing and made Stellas life possible. we are still part of the RCH with clinic appointments and will forever be grateful. Keep up the great work. A part of our hearts will forever be there. Thank you. Love the Sendeckys. Hello my name is Ebony Clark, this story is based on my 15 year old little brother that has Cerebral Palsy. And about our amazing mother.  Back in 02' my amazing mother Debbie Beazley, mother of 4 gave birth to my little brother Jayden Keneth Beazley. This unfortunately wasn't just any regular birth. On the 27th of November 2002 at 11:48am Wednesday morning Jayden was born at only 26 weeks, weighing just at 524grams at Mercy For Women’s Hospital. My mum was getting really bad stomach pain throughout her pregnancy and she just knew something wasn’t right so her and Jayden’s father (Gregory Beazley) went to the hospital, she had a 2 week stay at the Mercy for Women’s Hospital. My mum had a bad case of pre-eclampsia . The night Jayden was born (26th of November) my mum got worse, when the doctor had taken my mum’s blood pressure it was 180 over 107. Mum was booked in the next morning (27th of November) for an emergency caesarean, the next morning came, mum and Greg didn’t know what to expect they were both so scared. As mum was getting wheeled into the room the caesarean was held, all she could see was a bunch of doctors, it made her panic even more. At 11:48am Jayden came into the world. As they were cleaning mum up, the doctors had taken Jayden to special care. Mum was put on Floor 1, Wednesday morning waiting hours of her son to come in but all of a sudden that all she could remember until Friday morning my mum became very sick again. Her kidneys nearly shut down and we had almost lost our one and only mother. During the day the doctors kept bringing photos of Jayden to mum. Mum said to herself "I need to get better, for my son" so that she did, she was wheeled to where Jayden was, her reaction was speechless she was just so happy to be with her son. The 3rd of December 2002 mum was well enough to go home. On the 6th of December Jayden’s doctor had said Jayden’s got an infection, they were worried it was going to get to his blood stream, about a week later the infection at cleared which was great!!! Jayden is now weighing at 648grams he’s improving! Jayden has his good days and there are horrible days. Jayden had a Ego done for his heart. Doctors found his duct still open, 100s of medication wasn’t doing anything so Jayden had an operation a week later on the 19th of December. Mum was told the team from R.C.H came to Women’s Mercy to do his operation. The nurse finally came out a few hours later and said it all went well which was great. 3 days later again something just wasn’t right with Jayden. Turns out Jayden got an infection from his duct being done. He was not well at all. Jayden had x-rays and it showed a condition called "NEC" other words is his bowel is infected and parts of Jayden’s bowel was dead. Christmas morning Greg got a phone call from the hospital stating Jayden is getting transferred to the R.C.H for an Emergency Operation, he’s just getting sicker and sicker. Once my mum arrived at the hospital, depending what happens with his operation and how much of the bowel was actually dead they'd have to make to choice to say goodbye to my Jayden. The op will take about 2 hours to complete basically that's all they could say until they started the op. Half way through Jayden’s operation the doctor told mum they had found the dead piece of the bowel and it was only 10cms. My mum got to see Jayden half an hour later, words can’t describe how lucky we are as the family that my little brother pulled through. On behalf of myself, Jayden and my family we can’t thank The Good Friday Appeal enough for raising a lot of money to save my little brothers life. Mr Jayden Beazley may not be able to talk, he’s learnt to walk on his own and he’s deaf in both ears. But he’s no different than any other teenage boy. My mother is by far the strongest parent I’ve ever met and she'd do ANYTHING to make her kids happy and safe, she’s the reason I wanted to post this story and I think everyone all over the world deserves to know "NEVER GIVE UP, HAVE FAITH. WE DID. Also how much mum and Jayden kicked through and are my #1 survivors. Mother and son couldn’t be healthier. Thanks again for saving my brother!
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Our darling Stella was born 2nd December 2016 at 27 weeks and 1 day weighing 985grams. she was doing very well until the 2 week mark when I (Mummy) found blood in her stools. As soon as I mentioned this the Drs at The Royal Womens Hospital knew what was to come. That night we received a call within hours to say to come in as our girl ia extremely unwell. When we came in Stella's tummy was black and distended. She had the awful infection. Babies can get very unwell very quick. Unfortunately Stella got so sick we were prepared to say our good byes... no medication was working for her. The next day she got so unwell she was seen by surgeon Liz McCleod at RCH at RWH. She was transported to the RCH that day. 6am the next day we were told they were operating on Stella in her room as she was so sick and not getting better. Again we prepared for the worst and held her hand and said good bye. Stella had her surgery and pulled through. We were taken into a room and told she had lost 70cm of bowel and was left with roughly 50cm. Loosing over half of her small bowel which did not look good for her. The surgeon said she don't know what the future would hold and if she could lead a normal life. again, we feared the worst but i knew as her mummy I had a fighter on board. Stella now had a stoma which meant she would poo through her bowel through her tummy. we held her hand, I sung and read to her most hours of the day. I knew she could do this. Stella was on a very high form of life support and heavily sedated. Our heart broke. Within days Stella was fed my milk through a tube and started tolerating milk well to our surprise we were told it was a very long road ahead and we were always told to take one day at a time which we did. Within a break Stella was taken around from NICU to HDU. Massive step, her lungs were pretty good which was a huge bonus. Stella was also on TPN (nutrition through an intervene needle) so she can put on weight to grow. We were kicking goals to everyone's surprise. Months passed and it was decided that Stella was healthy and strong enough to get her stoma reversed and hopefully they could join the bowel together internally and sew her together and finally poo properly. Surgery was booked and Stella went under again! The surgery was a success! Luckily for us no more bowel was removed as Stella couldn't afford for that to happen and fingers crossed we are informed the bowel can grow and adapt in young children. Stella was back in NICU and recovering when things took a turn for the worse. We were never prepared for what came next. Stella was in so much pain from her operation she was jumping in her bed which was very confronting for my husband and I. Our poor baby was in agony. They upped her pain medication and upped her oxygen but something wasn't makings sense. My poor baby was on 80% oxygen the highest she could go and she has never needed that much even when she was born and she was still struggling. A scan was ordered and her lung started to collapse. What next... all of the sudden Stella did not tolerate the nurses move her and stopped breathing. I could see the fear in the nurse and they couldn't get Stella breathing so they slammed the emergency button on her and everyone came running hubby and I were ushered outside as they worked on Stella. All I remember was seeing her turn blue. I was hysterical I thought she was dead! I've never seen my husband so scared. Luckily they managed to get Stella in a controllable state. Stella got better from then and started on milk through a tube. The wait for a poo was the anxious wait. Day 3 we had a poo and it was music to our ears. Success. Our girl can poo normally, feeds kept increasing and tolerated well. Our champ was on full feeds so TPN was taken off and she was fed through a tube and also a few breastfeed a day. The tube eventually came out and Stella was receiving feeds all by mouth. All the lines were taken out and our rainbow miracle made it to the other side. I never doubted her but golly gosh what hell not even a full term bubba has gone through . What a gem, a superstar, a strong little lady. Home time came around and here we are 4 weeks later enjoying life as a family of 4. We couldn't thank the RCH enough which includes the support and help of all the wonderful nurses, doctors, social workers, surgeons, volunteers, food staff, Ronald Mcdonald house and finally the starlight room. You made not only our scary journey that little bit more easier but you made our eldest daughter (Stella big sister Ava) stay and visits daily pleasurable. You are all amazing and made Stellas life possible. we are still part of the RCH with clinic appointments and will forever be grateful. Keep up the great work. A part of our hearts will forever be there. Thank you. Love the Sendeckys.

 

We would love to hear your story or a story of someone you know whose life has been touched by The Royal Children’s Hospital.

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