CHLOE MORELLO: 'I was sent a $300k medical bill. It's how I discovered my daughter had a serious diagnosis.'

My husband and I were living in Los Angeles when Leonela was diagnosed with Cystic Fibrosis (CF) as a newborn. The way we were informed about her diagnosis was horrendous.

A few weeks after she was born, we were notified, not by our doctor, but by our health insurance — telling us her CF medications would cost USD $300,000 per year. It was appalling to find out that way. It baffled me that Leo's paediatrician didn't seem to know anything about it.

I can barely recall the early days following the diagnosis because I was so worried and stressed. When I was growing up, I knew a family that had three children, all of whom had CF, and all had passed away at early ages.

We had Leo booked into LA Children's Hospital to find out what on earth was going on. She was a chubby baby and usually, CF babies struggle with absorbing nutrients and get sick a lot. The Children's Hospital did the sweat tests and stool tests, and then we waited.

Watch: WELL: Carly Dober on post diagnosis grief. Article continues after the video.

Children with CF usually have a higher amount of salt in their sweat than other children. Her salt levels were very low, which was a positive sign. They diagnosed her as having CF. Yes, but a kind of "silent or dormant CF" as the nurse described it. They said it was a rather new diagnosis due to the US only implementing newborn screenings within the last decade.

We were told the CFTR gene mutation, which causes CF, showed up in her blood tests at birth, but Leo's health seemed fine, and no treatment was needed. We just needed to take her for check-ups every three months to monitor her condition.

We breathed a huge sigh of relief after being reassured by our doctor. Our daughter appeared and behaved healthily. She had even come through a bout of RSV at two months old, no worse than her older brother.

A year later, we decided to move back to my hometown of Batemans Bay on the South Coast of New South Wales. We felt it was important to get her connected with a CF specialist clinic in Australia as soon as possible, so they could continue monitoring her condition.

Leo had a referral to see Professor Hiran Selvadurai at The Children's Hospital at Westmead. The hospital was a four-hour drive from home, so we stayed two nights at a nearby hotel for her appointment. We were prepared to explain to the doctors about her "silent CF" diagnosis, and that although she was fine, we just wanted to have her medical profile on their record system for precautionary measures and to continue regular check-ups.

We brought her medical records from LA to the team at Westmead. Our new doctors and nurses told us in no uncertain terms that there was simply no such thing as silent or dormant CF. The CF clinic explained that newborn screening for CF had been around for decades in Australia and their medical team was accustomed to situations like Leo's.

CF involves thousands of possible genetic mutations, inherited from both parents who are carriers. In Leo's case, she has one common mutation shared by many CF patients, who require daily treatment and one rarer mutation. Our doctor suggested that this rare mutation might explain why Leo's CF appeared mild and remained asymptomatic. However, her cystic fibrosis still required serious and proactive treatment.

The CF tests conducted at Westmead were significantly more thorough than what we experienced in LA, which shocked and overwhelmed us. It was very traumatic for Leo with so many X-rays, sputum tests, stool tests, blood tests and sweat tests that took over half the day. We returned to the hotel at the end of the day feeling exhausted, upset and confused. We feared we had let our daughter down.

We drove the four hours back home.

Leonela was diagnosed with CF as a newborn. Image: supplied.

A few days after our very first appointment, one of the tests revealed that Leo had Pseudomonas aeruginosa bacteria present in her lungs. This bacteria can cause chronic infections, pneumonia and decline in lung function in people with CF. We were advised by her medical team that we needed to get her booked immediately for urgent and ongoing treatment at Westmead.

We were quite scared and unsure of what to do. I was frantic, trying to organise longer-term accommodation and figuring out how it would all work for the family at such short notice. The financial and emotional toll had already become overwhelming. We needed to stay somewhere close to the hospital. How were we going to find and afford a hotel or accommodation for weeks on end? How were we going to look after both Leonela through surgery and our three-year-old son Santino? We were extremely distressed.

Luckily, the amazing nurses at Westmead referred us to Ronald McDonald House Charities Greater Western Sydney and helped us secure our stay at the House in Westmead. It was an absolute lifeline for us. We had a comfortable place to rest, just a three-minute walk to Leo's ward.

We arrived at the House a day before Leo was admitted to unpack, tour the grounds and learn about the services and amenities. We spent one last night together as a family, enjoyed an incredible family meal prepared by volunteers and slept so well knowing we were in good hands.

My husband and I were stunned when we saw the kitchens, communal and personal fridges, pantry, living and play areas, winter gardens, laundry facilities, gym facilities, outdoor playgrounds and BBQ area. Ronald McDonald House provides incredible support to families going through the horror of having a sick kid.

Once Leonela had her surgery to get a PICC line installed, my husband and I were able to alternate nights staying with her in her ward. Being able to walk three minutes from her ward back to our room at the House was so helpful. If we forgot something or needed a snack, a rest, a quiet place to update family, get some work done (I am self-employed), or just take a break from the stress of the ward, Ronald McDonald House really took a huge load off our shoulders.

A week later, Leo was doing really well with her treatments and she transitioned into receiving the Hospital in the Home service. She wore a little backpack containing her medication and was hooked up via her PICC line, which meant she was cordless and able to leave the hospital bed. Leo enjoyed the playground and toys at the House, played with the other kids and was so much happier. So were we.

Ronald McDonald House changed what would have been a very distressing two weeks into a bearable and comfortable one where we felt supported and safe, able to put aside every other issue in our lives to focus entirely on our daughter.

We were no longer separated at night and were so close to her multitude of appointments. We could simply stroll across the road in the mornings to the hospital and return straight after for her nap, a snack break or to enjoy some of the programs. Our daughter really came out of her shell in the House. She felt so comfortable and was just smiling all the time.

"We are stronger as a family unit now, and we understand Leonela's condition much more." Image: Supplied.

We really enjoyed being able to participate in some crafts together at the in-house Learning Centre with other families. Leo loved getting creative with her hands after so much screen time being confined to a hospital bed. For us, we loved the healthy and nutritious meals and snacks so often provided. It was just so lovely to eat amongst the other families and share a smile and a delicious meal and not have to worry about preparing something or going out to buy something.

Two weeks went by so quickly and smoothly thanks to the amazing staff at Ronald McDonald House Greater Western Sydney and the amazing medical team. We made some great friends and are forever grateful for the amazing work this charity does.

It was a positive experience for us. We are stronger as a family unit now, and we understand Leonela's condition much more. Despite the stress, Leo could complete her last few days of treatment at the House so we were all together 24/7. Leo's doctors and nurses were second to none. Ronald McDonald House in Westmead is our home away from home.

All we could talk about was how brave Leo was and how much Ronald McDonald House truly held it all together for us.

Leonela's treatment worked. We eradicated the bacteria, and she has a daily treatment plan which she has taken on board really well. She has to be much more cautious than other kids, but her daycare, friends and family are all understanding. We come up to visit Westmead for check-ups and always stay at the House and even brought our son along the last time. We feel empowered and not alone.

My advice to other parents in a similar situation is to accept the help. I didn't want to have to ask my 65-year-old mother to look after our toddler for two whole weeks. I thought the House was about financially helping families, but it is so much more. Accepting help from the resources and support of people around us was the most important thing in our entire experience.

The Big Spin is a 12-hour spin-bike challenge taking place on Bennelong Lawn on Friday 5th September raising funds to help Ronald McDonald House support thousands more families like Chloe's.

The Big Spin will be a fun, adrenaline-filled way you can help raise vital funds.

Registrations are now open for The Big Spin. Find out more at: www.thebigspin.com.au . Spots are limited and filling fast.

Feature image: Supplied.