“I’m trying to find a cure for the airway disease associated with cystic fibrosis. I didn’t want to be one of those parents who sits back and asks, ‘when is it going to happen?’. My response was let’s get in and make it happen,” Dr Nigel Farrow said.

Dr Farrow is a current recipient of the MS McLeod Postdoctoral Research Fellowship, which is part of the WCH Foundation Research Fund.

His journey to medical research is different to others. After leaving school in year 10, he forged a career as a musician. In 2006, his second daughter Ella was born and very soon after she was in intensive care and diagnosed with cystic fibrosis. The diagnosis inspired him to go back to university to help her.

Nigel and daughter Ella.

Dr Farrow shared the impact of his work.

“I did three degrees over eight years to get a PhD in Medicine and now I am doing a postdoctoral in researching gene therapy and stem cells to prevent lung disease in people with cystic fibrosis.

“The team I work with are focussed on gene therapy and my interests are specifically on airway stem cells and the role they may play in a gene therapy setting. There are two approaches we are looking at.

“Our lungs are like our skin; the cells are continuously turning over. If we give gene therapy to cells in the lungs, it is going to be lost over time. What I’m doing is targeting the lung’s stem cells – that replace those cells – with the gene therapy. The idea is that once the cells die off, the stem cells that are now healthy due to the therapy will continually replace them.

“The other angle is that the stem cells are removed from the lungs of the cystic fibrosis patient. We correct them with gene therapy in the lab and then transplant the healthy cells back into the airways. These stem cells then pass on their genes and replenish the airways with the healthy cells fighting the onset of cystic fibrosis symptoms.

Nigel in the laboratory at the Women’s and Children’s Hospital. 

“The beauty with both approaches is that it is targeting the patient’s own cells and it is therapeutic.

“We are now further developing these treatments in rodents. Our initial published studies have been very encouraging and have shown that these approaches have merit and our foundation to continue is there.

“Ella has just started high school. Health-wise she is doing okay, but with the cold comes the worry, especially with the current flu season. The backbone of what I do is to find a cure for my little girl.”

Back to Medical Research

There is a group of health specialists in the Women’s and Children’s Hospital who work closely with patients and their families. They aren’t nurses or doctors and instead of a stethoscope around their neck and medicine in their trolley, you will find them carrying board games and colouring-in pencils.

They are the Play Therapists, and thanks to the generosity of WCH Foundation supporters – we are proud to fund the Play Therapy program.

Leeza and patient Lina.

Leeza is one of 10 Play Therapists in the Hospital. Through play and activity, she creates an interactive and bright environment and helps to reduce the children’s stress of being in Hospital.

Leeza shared with us the impact her work has on patients at the WCH and why Play Therapists play a vital role.

“Play Therapists are in the unique position where we are a part of the hospital environment, knowing the processes, systems and having rapport with the nurses and doctors, whilst also having the ability to create a fun environment for the patients.

“We have trusting relationships with the patients formed not only by creating that fun environment, but by helping them to gain control over aspects of their treatment.

“I think it is so important for kids in hospital to have some control where possible, because for most of the time they have none.

“As part of the treatment for burns patients they must have their skin scrubbed, which can be quite traumatising. I can’t change this as it is a key part of their medical treatment, but I can help the patient take back some control and make choices. In the past, I have spoken with the nurses and explained that the patient would like a couple of three-minute breaks throughout the treatment. We then allow the child to let us know when they want to take those breaks, allowing them to take back some control.

WCH patient, Alexis.

“My day at the Hospital begins with organising the children who can go Hospital School. If patients can’t go to school, I’ll organise to have a teacher come up to visit them.

“I then start to visit the patients on my ward. If they’re not infectious they will do activities in the ward’s shared areas. The activities can include art and craft, playing Play Station or board games, and sometimes we watch movies. I always give the patients the choice of what we will do. This is another way I can help the kids have some control.

“Play is not only used to distract the patients from being in hospital and create that fun environment, but it is also used to help patients express their feelings.

“One of my patients, who was eight-years-old, wasn’t speaking to anybody other than whispering to her two-year-old sister. When speaking with the family, I would speak in a manner that was child-friendly saying ‘your daughter is on holiday from talking at the moment’, letting her know it was okay to choose not to talk. This was important in building trust. When kids can’t express their emotions verbally, we use play and with her I used sand tray therapy. When no one else was around, she would draw words in the sand. She then whispered two words to me. I was the first person in Hospital she spoke to.

“I would say Play Therapists are quiet achievers, but I think our job in the Hospital is so important.”

View our latest impact update

For many families planning a holiday, boarding the plane and arriving at the destination is a time filled with great excitement.

For parents of children who are very sick, the stress of getting on a plane, the need to take so much equipment and medicine, coupled with the fear of being a distance away from their child’s doctors, unfortunately often deters the family from going away.

However, these families still want and need to holiday and create treasured memories, especially when they sense it could be their last trip together.

The Women’s & Children’s Hospital Foundation Beach House is a very special place for children with complex medical needs and life-limiting illness and their families to enjoy and create memories.

The Beach House at Victor Harbor. Photo: Danny Jenkins Photography.

The home is specifically designed, constructed and medically equipped to meet the needs of the children, making it truly accessible for the families. The stunning design, interiors and landscaping of the Beach House have created a beautiful sanctuary where families can relax. The home meets all of their medical requirements, but feels nothing like a hospital.

Remiko Prosser and her daughter Allira are one of the first families to stay at the Beach House.

Remiko shared why the Beach House is so important to families like hers.

“We’ve been fortunate as a family to experience some amazing holidays with Allira. These holidays have been extremely hard to achieve and have many times ended up in hospitals all over the country. In saying that, those beautiful, smiley and happy memories are so worth the risks we’ve had to take.

Remiko and her daughter Allira guests of the Beach House. 

“Unfortunately, these days it’s simply too hard for us to continue to travel with Allira. Her health is no longer stable. Aeroplanes and disabled toilets don’t have anywhere appropriate for us to change her nappies. Hotels and holiday homes don’t have electronic hoists to lift her from her beds to assist with her reflux and bed sores.

“I have to pack her mountain of medication and specialised feeds and pray that I didn’t forget one of them.

“This is exactly why the Beach House project is so vital and important to families likes ours. It means we can once again enjoy time with our friends and family to create forever memories and for once feel ‘normal’ and not so isolated and alone.”

To learn more about the Beach House click here.

View our latest impact update

The day your newborn leaves hospital to go home is a day every parent remembers. Anne Papadimitroulis had to wait 20 months before she could take her youngest son Dimi home from the Women’s and Children’s Hospital.

However, without having access to loan equipment from the Hospital, Dimi would have spent many more months of his young life away from his family’s home.

The WCH Foundation funds medical equipment both in and out of the Hospital, so children like Dimi can go home and be with their family sooner.

Dimi in June 2013 after spending 300 days in Hospital – Dimi in March 2014 just before leaving to go home.

Dimi’s mum, Anne, shared the incredible story of her son and what it meant to their family to have him home.

Dimi was born seven weeks premature. An operation at just three days old revealed Dimi had a serious bowel condition and needed special food through an IV drip and later a feeding tube through his nose. He was also diagnosed with a chronic lung disease and needed constant oxygen to help him breathe freely.

This equipment could only be accessed from within the Hospital.

The first months of Dimi’s life were difficult, the life-saving equipment in the intensive and critical care units at the Hospital was vital to his survival.

“It was hard when Dimi lived in the Hospital – but we really didn’t know any different. The staff were so amazing with him. I would be there all day with him and when he’d fall asleep, I’d head back home – make dinner for the family and be there again when he’d wake up,” Anne said.

At Easter of 2014 Dimi was finally able to be discharged. A milestone only possible thanks to a portable Optiflow Oxygen Humidifier on loan from the Hospital. The equipment warmed oxygen to make it easier for Dimi to breathe.

“Coming home was an Easter I’ll never forget! It made a huge difference to our lives because we were finally home as a family, together, instead of spending birthdays and Christmases in Hospital,” Anne said.

“It was scary at first – there was a fair bit of equipment we needed but it meant no more running around and our family was finally together.”

Dimi and his mum Anne.

Dimi was finally with his family and able to go to the beach, the park and join in family events – all the things he had missed out on while being in Hospital.

In 2019, Dimi recently started school and incredibly has also taken his first unassisted steps.

Although Dimi no longer requires the oxygen equipment during the day, he still uses an oximeter (this measures the oxygen levels in the blood) and requires oxygen at night. He has check-ups at the Hospital every three months, and Anne goes to the home equipment centre once a month to collect his oxygen and feeding supplies.

“It makes me a little tearful thinking about all the hard times we all went through, I remember being told he may never come home and live a normal life. Dimi has never given up, and neither have we,” she said.

View our latest impact update

The WCH Foundation Beach House project has reached fruition with the construction of the home completed.

While this milestone means the significant project for Bella Build & Design has come to an end, Bella’s owners and employees know an exciting chapter for the families who will enjoy the stunning home they have helped create has begun.

WCH Foundation Chairman Nick Begakis AO, Bella Build & Design Paul Condessa and Helen Rapuano, WCH Foundation CEO Jane Scotcher and Head of Corporate Services Jodi Wright, and Bella Build & Design owners Paul and Marisa Bellardino.

The special morning: handover

On Tuesday 28 May 2019, Bella Build & Design’s owners Marisa and Paul Bellardino officially handed over the Beach House keys to the WCH Foundation’s former Chairman Nick Begakis AO and Chief Executive Jane Scotcher.

“On behalf of Marisa and I, and the Bella team, we are so thankful for the opportunity to be involved with the Beach House,” Paul said.

“When we met with the Foundation in March 2018, we set ourselves a goal to build the Beach House. Thanks to the help of a lot of generous people, those who have worked with us on the build and our new family at the Foundation, it has been a wonderful experience and we have achieved our goal.

“Throughout the project we were focussed on getting the construction done, but now it is complete the magnitude of what we have created is sinking in. Over the next few months and once we see the first family visit, that is when the emotions will truly hit home.”

Nick said it was clear the Bella team had put a lot of heart and soul into the Beach House.

“We started on this journey with Bella just over a year ago and it has been a fabulous,” he said.

“The Beach House is more than just a building project to Bella; they know the impact their work represents and will have on the families who stay.

“On behalf of the WCH Foundation’s Board and staff, we thank Bella and we look forward to welcoming the first families.”

A beautiful design

Marisa said the completed Beach House is much more than she expected it would be.

“The size is beautiful, the light is lovely, and it has a nice calming aspect that the families will really love, and I hope will offer them an escape,” she said.

“My favourite space is the kitchen. I love the natural light in the open kitchen, dining and family room. It is a gathering place, where families can share how they have spent their day and enjoy a meal together. On a beautiful sunny day, they will be able to open the doors to the deck and create a beautiful extended space looking out over the water.”

The people and moments to be cherished

When asked ‘what makes him most proud of the project’ Paul answered, “the way everyone has come together to make it happen”.

“You can’t underestimate the generosity of all our friends, family, suppliers and contractors who have worked with us on this project. They have all had the same goal of helping the families who will stay here, and I don’t think we could achieve this without them. It’s a team effort,” he said.

“Of course, the start and finish of the construction are key, exciting moments, but another moment that is special to me was pre-construction when we held our fundraiser at the Adelaide Oval. We had never organised anything like that before. It was an unbelievable success and we raised over $155,000.

“Another moment was the Bella working bee when everyone in our team donated their day. It was a fantastic day. We achieved a lot and there was also great camaraderie within the crew.”

Next steps at the Beach House

In the first two weeks of June 2019, the nature play space was created by Coastal Landscaping & Fencing.

To find out more and to support the Beach House project, click here.

Judy Ward is a mum of four and grandma to nine.

On Mother’s Day, she enjoyed lunch at the St Ignatius College Football Club, where her two granddaughters Adele Czechowicz and Lucy Roberts play.

At age 21, Lucy is Judy’s eldest granddaughter and the older sister of Sam Roberts.

Many familiar with the Women’s & Children’s Hospital Foundation (WCHF) know Sam’s story. In 2005, just before his fifth birthday, Sam passed away from Niemann Pick disease type C, a very rare genetic neurological degenerative condition.

In memory and to honour their son, grandson and brother, the Ward and Roberts families established the Sam Roberts Family Fund and charity bike ride ‘Cycle 4 Sam’.

As mother to Michelle – Sam’s mum – and a grandma, Judy has shown unconditional love and support to her family. She is very modest about any praise saying, “it is only what any grandmother and mum would do”. Judy has also been a proud advocate for the WCHF Beach House.

Judy shares her story with us, as part of our Mother’s May campaign.

Judy and Sam in the Women’s and Children’s Hospital. 

“When we first recognised that Sam was unwell, I was lucky enough to be able to take as much time off work as needed to help Michelle. I feel very lucky that I was able to be there, to support Michelle and be with my grandson.

“Together we went to so many appointments, which were especially continuous when doctors were trying to diagnose Sam’s condition.

“Michelle had just given birth to Charlie and I remember running along the corridors of the Women’s and Children’s Hospital. I was pushing Sam’s pram and Michelle was following with Charlie’s pram.

“I would sleep overnight with Sam, to provide Marty and Michelle a break, and together Margaret Roberts, Marty’s mum, and I would help with the running of the household.

“Michelle has expressed her gratitude many times for the support the whole family provided her and Marty.

The Roberts family following Cycle 4 Sam.

“One of the most special times we spent together as a family was during a holiday on the Gold Coast.

“There is a lot of pressure and tension within families during times of illness and to be able to break that routine is important for everyone.

“As wonderful as our times at the Hospital were, the experience of having time together with Sam away from the hospital environment, was so special for our family and is why the Beach House will be so important for families.

“Places like the Beach House can make all the difference for families because they can create good memories and have quality moments together that provide strength to get through the tough times.

“Sam was gorgeous; he always will be. We have all taken him with us and we just hope that through his story and the Beach House other families will create wonderful memories and find the strength to support each other.”

We would love to hear your stories about the Super Mum in your life! We will choose one extraordinary Super Mum to win a $500 Burnside Village voucher.

Nominate your Super Mum and share her story here.

Monique O’Donohue started her Mother’s Day in the best possible way… a sleep-in! Cuddles in bed with her two children Levi and Maddie, unwrapping the thoughtful presents they made and chose for her, and a picnic in the Botanic Gardens completed her lovely day.

Monique’s four-year-old daughter Maddie is a bundle of energy. She has enjoyed starting kindy this year and on Mother’s Day loved exploring the Botanic Gardens with her older brother.

However, the freedom to enjoy nature and play hasn’t always been Maddie’s way of life. Two years ago, she was diagnosed with Stage 4 Neuroblastoma. In the first year of treatment, Monique and Maddie spent 265 days at the Women’s and Children’s Hospital (WCH). The following year, they spent 150 days in Hospital with most of the time spent in the Michael Rice Oncology Ward and Clinic.

Monique shares her family’s story, which truly shows why she is a Super Mum.

“It was gut wrenching and terrifying to be told your daughter has cancer. Maddie was two-and-a-half at the time. There were no signs that she was unwell until the few weeks leading up to the diagnosis, when she had a virus and a temperature, which is fairly normal for someone her age.

“I also noticed her sleeping was quite restless and she had an extreme temperature. After several visits to GPs, blood tests and scans, a massive tumour was found behind Maddie’s stomach, with the cancer already spread to her hips and shoulders.

“We were taken to the Michael Rice Oncology Ward, which became our home for the next two years. Maddie underwent five months of chemotherapy to shrink the tumour to a ‘safer’ size where it could be operated on. In this eight-hour operation 95% of the tumour was removed. Four more months of aggressive chemotherapy and two stem cell transplants to attack any remaining cells followed. This meant lengthy stays in isolation and ICU with additional unexpected side effects.

Simon, Monique and Maddie O’Donohue in the Women’s and Children’s Hospital.

“Maddie also had 20 radiotherapy treatments at the Royal Adelaide Hospital, whilst still having treatment at the WCH including six months of immunotherapy and more than 25 transfusions of red blood, white blood, platelets, plasma and ongoing kidney treatment.

“There is a 50% chance the cancer can come back. Maddie now spends at least one day per fortnight at the WCH when tests for her blood levels and kidney function, along with other check-ups take place. Every three months she has scans to see if the cancer has come back. At the moment the cancer hasn’t returned, and she seems to be going OK, but it’s so scary that the doctors think that it could come back that quick.

“Levi, who is nine, understands what Maddie has been through in the way an adult does. He worries like my husband Simon and I do. Leading up to a scan we try not to make him aware of it, because you can see he does worry. When we tell him the results, you can see the relief on his body like myself and Simon feel.

The O’Donohue family.

“Maddie always asks when we will visit the doctors and nurses, because she misses them. The teachers from Hospital School and the play therapists were also wonderful during our time there. They made sure she wasn’t missing out on being a child and made the environment as comfortable for her and that was really comforting for us.

“Motherhood is the most valuable and important thing I have ever done. You study and you strive to achieve in your career, but being a mum is the most humbling thing. The love you feel and get back from your children and the journey they take you on is so special. Every day you are so proud of them, especially watching their strength and love for life.”

We would love to hear your stories about the Super Mum in your life! We will choose one extraordinary Super Mum to win a $500 Burnside Village voucher.

Nominate your Super Mum and share her story here.

Sabina kc and her husband Sanjiv welcomed their first child Divyank on December 14, 2016.

At 10 months of age, Divyank was diagnosed with Crouzon and Pfeiffer syndromes by veteran craniofacial surgeon, Professor David David.

In the past 17 months, Divyank has had 12 major surgeries, mostly to the head and brain, 11 of which have been at the Women’s and Children’s Hospital.

Sabina is a Super Mum this Mother’s May and she shares her story.

“It has been an extremely tough time for our family for the past two years. I have been a full-time carer to Divyank, and Sanjiv has not regularly been at work due to the severity of Divyank’s condition and the need for him to join and support us during the lengthy hospital stays.

“Despite of all this when I am with Divyank at home I forget the past and all the hardship we have had in recent time. We are happy and feel blessed to have him with us.

Sabina kc and her son, Divyank.

“Before coming to Adelaide, Divyank saw doctors in three different hospitals in the ACT, which is our home state, and NSW, however his condition continued to deteriorate. Divyank had trouble breathing and would often choke while sleeping in the middle of the night and it was getting worse and worse.

“Sanjiv and I were researching intensively as I felt the urgency of intervention and at that stage we were prepared to do anything and go anywhere for treatment.

“Sanjiv found the work of Professor David. Initially he thought he was based overseas, but when he carried out more research, we found that Professor David was based in Adelaide. The first time we saw Professor David was at his clinic at Macquarie University in September 2017. He instantly recognised Divyank’s condition as severe and we were immediately advised to travel to Adelaide for immediate surgery and told there would be many more in the future.

Sanjiv, Divyank and Sabina kc.

“Divyank has one of the rarest and most severe Craniosynostosis conditions, which has also caused issues with his eye, ear, nose, teeth and spine. He has a severe breathing problem and requires high flow oxygen machine to assist with breathing while he sleeps.

“Every night can be so hard as Divyank wakes up a lot and I don’t sleep almost at all. But every time Divyank wakes, he has a cheeky smile and it is beautiful.

“Everything is amazing about being a mum, and being his mum is very rewarding. Every moment with him is so special.

“As a mother, I don’t think of anything but love for him and have the belief that after all his surgeries he will be able to live a normal life. We love him so much.”

We would love to hear your stories about the Super Mum in your life! We will choose one extraordinary Super Mum to win a $500 Burnside Village voucher.

Nominate your Super Mum and share her story here.

To celebrate Mother’s Day and International Nurses Day, we’re delighted to introduce you to Super Mum, Emma Saunders.

Emma became a mum for the first time on 19 October 2018, welcoming son Charlie. Before embarking on motherhood, Emma worked as a Clinical Nurse at the Women’s and Children’s Hospital for 10 years in the Michael Rice Centre’s Haematology and Oncology Unit.

“After working at the Hospital, I always knew I wanted to be a mum,” Emma said.

“I absolutely love working in the oncology unit and caring for the children and adolescents receiving treatment for blood disorders or cancer. You get to know the children, their parents and their extended families, and help them through their journey.

“I would hear parents speak to the intense love they have for their children and when Charlie was born, I instantly felt that love and emotion myself.

“I get to much enjoyment from watching Charlie grow and witnessing his milestones.”

Emma Saunders with son Charlie and husband Jared.

Emma said the biggest challenge she’s faced as a mother was Charlie’s premature birth.

“Little Charlie was born nine weeks early, so he was in the neonatal intensive care unit at Flinders Hospital for the first month of his life.

“The hardest part was becoming a mum for the first time and having to be away from Charlie every night, but this also made me stronger.”

Emma with son Charlie and husband Jared.

Emma said a career as a nurse has instilled many qualities needed for motherhood.

“The night shifts have prepared me for the many sleepless night my husband Jared and I continue to encounter! I have also learned great patience.”

To celebrate her first Mother’s Day, Emma plans to enjoy a picnic in the park with her Mum and Mother-in-Law.

We would love to hear your stories about the Super Mum in your life! We will choose one extraordinary Super Mum to win a $500 Burnside Village voucher.

Nominate your Super Mum and share her story here.

When Angela Berg wakes on Sunday 12 May (albeit it could be in the early hours thanks to six-month old daughter Penelope) it will be a morning to remember with Angela celebrating her first Mother’s Day.

Angela and husband Nicholas welcomed Penny into the world on 6 November 2018 at the Women’s and Children’s Hospital.

“Honestly, Penny is our everything and we are so lucky to have her,” Angela said.

Angela during her final term of pregnancy at the Women’s and Children’s Hospital.

However, as all mums can attest to, motherhood can deliver many challenges.

“I am a Type 1 diabetic and therefore Penny was a high-risk pregnancy. Due to placenta failure, I had an emergency c-section at 36 weeks,” Angela said.

“Penny spent her first six days in the Special Care Baby Unit. Because I am a Type 1 diabetic, there was high-risk that Penny would have low blood sugar and when she was born her level was at 0.3. But Penny was amazing, she showed us her strength and we went home on the seventh day.”

Angela with Nicholas and daughter, Penny, at the Women’s and Children’s Hospital.

For the first 12 weeks after coming home Penny had bad reflux and at the end of January Angela was diagnosed with Post Natal Depression (PND).

“I was on near to no sleep and needing to manage my Type 1 diabetes with breastfeeding and Penny’s reflux added to the challenge. I wasn’t prepared for how hard motherhood would be, but I got through it though, because I love her, and I’ll do anything for her.”

Angela is open to talking about PND, a condition she thinks more people need to discuss.

“It’s OK to not be OK,” she said. “Since I was diagnosed and have engaged in the support available, I have been a lot better. PND is not something I am proud of, but I am proud of how far I have come since being diagnosed.

“Becoming a mum, has made it so worth going through what I have been through. I would do it all again in a heartbeat.”

With Mother’s Day marking the first of many celebrations to come in future years in the Berg household, Angela said her main goal is to “raise Penny to be kind, nice and respectful and to be a good person”.

We would love to hear your stories about the Super Mum in your life! We will choose one extraordinary Super Mum to win a $500 Burnside Village voucher.

Nominate your Super Mum and share her story here.