Levi & Austin’s story

Levi & Austin’s story

Two-year-old identical twins Austin and Levi both have cystic fibrosis – the most common life-limiting, inherited disease affecting the developed world.  It’s relentless, and it will eventually rob them of their futures.

Already parents of two beautiful daughters, in 2015 Kelly and Daniel found out they were having another baby.  ‘It was unexpected, but we were thrilled,’ said Kelly. They were soon to become a family of six.

It was an exciting time and cystic fibrosis (CF) was far from their minds.  Looking back Kelly says her CF journey began about 40 years ago when her sister Hayley was born with the disease.  It was the reason they discussed the likelihood of CF with their Obstetrician during Kelly’s first two pregnancies.  They were told it was incredibly rare to be a carrier of the CF gene and they went on to have two beautiful healthy girls, Taylah and Alannah.

With this new pregnancy came a new Obstetrician, he was a little more stressed about the situation.  ‘We learnt it was more common than we’d been led to believe. At that stage we thought we were only having one baby.  We were told about a genetic test the mother could take where a simple blood test would reveal if the baby had CF or not.  It was quite early in the pregnancy at this stage, only 8 weeks so we had time to do the test,’ recalled Kelly.

It was at the 12-week ultrasound where things changed considerably for the Collins family.  Kelly wondered if it were possible, they might have twins. ‘My grandmothers’ brothers were twins, so the thought was there, but we’d already confirmed there was only one baby.  You can imagine my surprise at my twelve-week scan, boom, there’s two!  It was such a shock.  My husband Daniel was over in the USA on a work assignment, so I had to skype him to tell him we were having twins.  It was very exciting, I remember being on such a high.’

 Unfortunately, the high would soon be replaced with despair, CF was about to enter Kelly’s life again.

CF is a multi-organ disease affecting the lungs, gut, nasal cavity, liver, pancreas and reproductive tissues.  There is currently no cure and the life expectancy of a person with CF is just 38 years.  Most will die from lung disease.

When Kelly tried to organise the CF test, her Obstetrician explained there was not much point.  ‘Our Obstetrician thought our twins would be fraternal.  There was no sack sharing and no placenta sharing, so when we requested the CF test, he said the results would not specify which baby had what genetic background.  Basically, the only test available to confirm CF would be an Amniocentesis and I’d need to have two of them, one for each baby.’

 Having twins meant Kelly was already in a high-risk pregnancy category and although she and Daniel thought about it long and hard, she said ‘We simply couldn’t go through with it.  There was no way we were going to put my pregnancy at risk.’  Not knowing haunted them throughout Kelly’s pregnancy, but they kept telling themselves they’d be fine because they’d already had two healthy girls.

 Kelly says although CF sat in the back of their minds, the pregnancy went ahead without a hitch.  Other than the load of carrying two babies, it was a very healthy 37-week pregnancy.

Kelly underwent a planned C-Section and Austin was born first.  Everything looked good, no complications.  Levi came out next, but he wasn’t breathing.  Kelly said she could see the medical team working on the boys in the corner of the room,  I got to meet Austin for a fleeting moment, but not Levi because they were taking him straight to the Special Care Unit.  Austin went with him and they sent me to recovery, it all happened so quickly.’

Back in recovery, Kelly became increasingly anxious.  She hadn’t even laid eyes on Levi and had no idea what her baby boys were going through.  She bailed up one of the nurses and asked her to find out what was going on.

’I told the nurse I was going insane and needed to find out what was happening with my boys.  She rushed off and before I knew it, she was back with two polaroid pictures of my babies.  That was my first meeting with Levi. I’ll never forget it and I’ll never let go of that photo, it’s so special to me.’

At two days old, the Doctor transferred the boys to the Royal Children’s Hospital in Melbourne.  They didn’t like the look of either of the boys and Levi had vomited green liquid, they were very concerned.  ‘By lunch time the boys were in an ambulance, on their way from Geelong to the Royal Children’s Hospital in Melbourne.  It was hectic.  I was still on so much medication from my c-section, I really didn’t know if I was coming or going.’

When they arrived, a surgeon looked over Levi and then Austin.  Kelly could see he was a bit more intense with Austin and recalls him saying ‘I think there’s a bit more going on here.’

 ‘That was when he turned to me…my mum was with me at the time too, and he said, “is there a history of CF in the family?”  It was like I’d been punched in the chest.  I couldn’t breathe.  My mother and I just looked at each other because we knew exactly what that meant.’

CF is the most common, life-limiting, inherited disease affecting the developed world, with one in every 2,500 children impacted.  From birth, the treatment and management of CF is life–long and intensive and currently there is no cure.

When the Doctor asked Kelly about CF, her world started spinning.  ’My mum and I became very emotional.  My husband looked at me and wondered why I’d had such a response to the doctors’ question.  I told him that CF meant cystic fibrosis and that is what my sister Hayley has,’ said Kelly.

The doctor sent the boys off for more x-rays.  ‘They ran a dye contrast through the boys to see how their bowels were behaving.  They did Levi first.  The dye contrast managed to run through which was good news because it meant that he wasn’t completely blocked. With several processes they would be able to flush him out.  He still had a major road ahead, but there was a way we could fix this problem without surgery.’

Next up was Austin, the dye contrast only ran so far.  He was totally blocked, and part of his bowel was quite compromised.  Austin needed emergency surgery.  By the time he was prepped it was after midnight. It had only been 72 hours since Kelly had given birth.  Everyone was emotionally and physically exhausted and Kelly was still recovering from her caesarean section.

Like me, I’m sure you’d do anything if you thought you could save newborn babies like Austin and Levi from going through invasive tests and life-threatening surgeries. Will you give a gift to help fund research that could eliminate CF?

Finally, Austin came out of surgery.  They had to remove about 30cm of his intestines and put in a stoma, which basically means the bowel is rerouted through an artificially created hole in the abdomen,’ said Kelly

Austin was placed in the Paediatric Intensive Care Unit, where he remained for two months, facing more life-threatening battles, including a partial lung collapse.

With Austin recovering from his surgeries in hospital, Levi was given the all clear to go home.  It had been two weeks since Kelly had given birth.  They finally returned home, but their house felt incomplete.  ‘It didn’t feel right without Austin,’ said Kelly.

During the week Kelly and Daniel would drop the girls at school and head to the Hospital, returning home at night.  And on the weekends, the whole family would go to the hospital together to be with Austin.

‘We still hadn’t confirmed CF at this stage, we were waiting on the results from the blood tests.  We didn’t know if the boys were identical yet either.  Because of course, if they were identical, they would share identical genes and if one had CF, then the other would too.’

‘We got Austin’s result first.  The Doctor confirmed he had CF.  It was expected, but of course we’d hoped it wouldn’t be the case.  Nothing can prepare you for hearing your baby has just been handed an expiry date.  Nothing.  And after an hour, during the same counselling session, Levi’s results come back as positive for CF too.  A double blow. ‘

The devastation of CF is that it takes your life well before that of an average Australian, with life expectancy at just 38 years.

‘It was in that moment of despair in the Doctor’s office that our CF education began.  Despite our devastation, we had to learn about CF, new things, things my mother didn’t know about in the 80’s with my sister’s CF.  All these different bacteria, cross infection and what we had to avoid.  The doctor said generally we shouldn’t have the boys around other people with CF, but we had to live and get on with life and they were going to be exposed to the same stuff anyway, so not to concern ourselves too much with them being around each other.  I remember him telling me life was going to be busy,’ said Kelly.

For people with CF, being closer than six feet apart to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is called cross‐infection. Not only are these dangerous germs difficult to treat, but they can also lead to worsening symptoms and faster decline in lung function.  Having twins with CF was going to be an enormous challenge and Kelly and Daniel would have to develop an environment that would keep them as safe as possible.

Once they were all home, they developed a new routine to help everyone settle. Part of that routine involved negotiating Kelly’s sister’s CF, ‘We can’t go to her home, and when she visits, we all take the necessary precautions, like wearing masks and sanitising.  She’s been incredible throughout this journey. We’ve never exposed them to anything, and they’ve never caught anything from each other so we’re obviously doing something right there.’

After about six months they did a test which confirmed the boys were identical.  Understanding how rare it must be to have twins – both with CF, Kelly called the Australian Twins Registry.  She discovered there were 15 sets of twins registered with CF in Australia and only three of those were identical, including Austin and Levi.

‘Once I knew the registered statistics for Australia, I was curious about worldwide figures.  I’ve found it difficult to get that information, but I believe it’s minimal.  I follow other families on Instagram and know of two sets of boys and two sets of girls in America.’

Identical twins share the exact same genes, and for Austin and Levi this meant they had both inherited G551D and Delta 508 (the most common CF gene).  Having G551D meant the boys could take a drug called Kalydeco, which doctors told Kelly and Daniel had produced some good results.  At the time of their birth Kalydeco wasn’t an approved drug for the boy’s age bracket, but in February 2018 it became available for ages two and up.  For Kelly and Daniel, it was a countdown. Their goal was to keep the boys well enough, until their second birthday, so they could access a drug which might keep them stable until a cure could be found.

It’s hard not to see the injustice of CF.  Living with the knowledge that your children probably won’t live long enough to have children of their own is devastating.  Hoping they’ll make it to two years old so they can access drugs to help keep them alive until a cure can be found, is unfathomable.  But that is the harsh reality for people like Kelly and Daniel.

There is currently no cure, and whilst medicines and therapies can aid in living with CF, it doesn’t take away the very real threat that it could be a simple cold or flu that takes their life.

It’s just not acceptable. We believe that a world without CF is within our reach and it’s only when we take action, that great change happens.

‘I want to give them the best start I can, and a cure is that for me. With a cure we won’t have to be scared anymore, we can stop worrying all the time.  We won’t have to worry about medication or side effects, or the clock that’s constantly ticking, reminding us of the CF timeframe . A cure would mean CF wouldn’t be the big constant in our lives, and Austin and Levi could just be regular little boys. 

I don’t underestimate the battle ahead for Austin and Levi and know there’s much to be done, but with the support of extraordinary individuals like you, our investment in CF research has grown from strength to strength.  In the last 12 months Cure4CF has funded over 11,175 hours of CF research and development.  We’ve increased the hours of existing researchers and encouraged new ones to join our fight.

People who donate to Cure4CF give us the best chance we have for Austin and Levi to live a full and healthy life.  I truly believe it’s those people who invest in research that will give them their best chance.  Without their donations I don’t think we can get there,’ said Kelly

It goes without saying the Collins family are fighters, facing each CF challenge head on. But there’s an additional challenge.  The boys have been recently diagnosed with Autism and even though their language skills are improving every day, it does make dealing with CF even more difficult.

‘They can’t tell us how they’re feeling, and we need that for CF.  We need them to be able to say, “my stomach doesn’t feel well, or my chest doesn’t feel well, or I can’t breathe properly.” Crucial things we need to be aware of, so we know how they’re coping in the CF world.’

‘And because of their Autism they don’t like the feeling of the masks on their face, which makes visiting the hospital for regular check-ups and cross infection really challenging.’

Despite everything that’s been thrown at them, Kelly and Daniel are constantly amazed at how resilient Austin and Levi are.  They refer to them as their ‘Twin Warriorz’.

‘People often tell me they didn’t understand CF or know of its devastation until they’d heard our story and met the boys.  They can’t believe these two beautiful, cheeky boys could be so unlucky.  But we don’t dwell on that, it is what it is, and so now we must roll up our sleeves and get to work on defeating this monster.  There’s no other choice for us.’

‘That’s why we wanted to share our story with you. Because we hope now you’ve had a glimpse of what they’re up against, when you look at our boys, you’ll want to help them too.’

‘From the bottom of my heart, thank you for reading our story.’

Austin and Levi’s story may be unique, but their battle is shared by many.  I know the solution is far from simple, but the action we need to take is clear.

We need a cure and research is the answer.