LITTLE Addilyn Hook knows.

Addie’s only three years old, but she knows her twin brother Fynn is struggling. Amazingly, he’s defying the odds – and medical opinion.

Fynn and Addie were born at 32 weeks – nearly two months early – and their bond is special.

Parents Fallyn and Travis Hook know their twins share a profound sense of inter-dependence and shared experiences – an unshakeable, vicelike bond known only to twins.

For Fynn, having Addie by his side means everything.

Doctors and neurologists suggested terminating Fynn’s side of the pregnancy after he was flagged high-risk of being born with cerebral palsy.

What the experts didn’t quite understand was that Fynn had his sister right there beside him. He was safe, in good hands, and ready to face the world – nearly eight weeks ahead of schedule, in fact.

Their mum Fallyn said it was a scary time.

“The neurologists gave us worst-case scenarios for Fynn, and ultimately their recommendation was to terminate his side of the pregnancy,” Fallyn said.

“We couldn’t make that choice without genetic testing to say Fynn’s life would definitely be the way they suggested. We were told Fynn would have a very difficult life and would need lifetime care.

“I kept saying to the doctors ‘we can’t make the choice you are asking us to make, without knowing everything’.

“A ‘could-be’ wasn’t good enough for us to live the rest of our lives wondering ‘what-if’.”

Vicelike bond

Addie knew what was happening to her brother, well before they made their unscheduled arrival.

“It’s funny really, witnessing their bond first-hand,” Fallyn said.

“We often joke, that during the pregnancy, while we had doctors and specialists predicting what Fynn’s life would be like, and all of them pushing us toward termination, Addie was already looking after her brother.”

Fynn and Addie are dichorionic diamniotic twins, where each foetus had its own placenta and amniotic sac.

“When we were pregnant with the twins, Fynn was always a little bit smaller than Addie,” Fallyn said. “Because of that, we were referred to Maternal Fetal Medicine in Brisbane, where it was detected he was missing the corpus callosum, which is the centre part of the brain.

“Effectively, it’s the main highway that helps pass messages between the left and right sides of the brain.

“We got an amniocentesis done – a prenatal diagnostic test – to see if there was a known genetic cause for Fynn’s brain abnormality. We were waiting on the result when Addie’s amniotic sac ruptured, leading to pre-term labour. They arrived just before 32 weeks.

“It’s like she said, ‘OK brother, we’re in this together, let’s go’,” Fallyn smiled.

But it’s much more than just being ‘in this together’. So much more.

Addie and Fynn are inseparable, and Addie watches out for her brother every awkward step of the way – and watching out for both of them are older siblings, Noah and Riley.

“Riley and Noah are the best older brothers, even when the twins are a bit temperamental, as most three-year-olds are,” Fallyn said.

“Our journey raising awareness and encouraging acceptance of differences really started with the boys . . . explaining to them Fynn’s needs and educating them about his disability.

“We were always aware and had open conversations with them about differences, but you get a whole new appreciation when it becomes your ‘daily’.

“Fynn’s diagnosis changed all of us in the best way,” she said.

Welcome home

The twins’ arrival nearly eight weeks early meant a lengthy stay in hospital.

Addie spent seven weeks at John Hunter Hospital’s Neonatal Intensive Care Unit, and Fynn was there for eight weeks.

NICU provides highly specialised, family-centred care for sick and premature newborns.

“We had eight weeks away from Noah and Riley,” Fallyn said.

“I went four weeks without seeing the boys, which was the longest I’d ever been apart from them.

“It was toward the end of Covid. There were still restrictions on visitors, so our families didn’t get to meet the twins until we snuck home without telling anyone – we surprised everyone when the twins were two months old,” Fallyn smiled.

The ties that bind

Fynn and Addie are inseparable – the profound connection between twins is truly a tie that binds.

“The twins thrive off each other,” Fallyn said.

“Fynn wants to do everything he sees Addie doing. Sometimes, he will say things, and if we don’t understand, Addie steps in and helps by explaining what he wants or needs.

“They fight like you wouldn’t believe, but if anyone else tries to do the same to either of them, the other is right there defending.

“Addie is protective, in the bossiest way. She will tell Fynn to slow down, to be careful, so he doesn’t hurt himself,” Fallyn said.

“We have an ultrasound picture where you can see the sac line separating them, but it looks like Addie is punching Fynn. We joke she has been bossing him around since conception.

“They don’t spend a lot of time apart. But when they do, they look for each other and ask for each other.

“They say a quiet toddler is bad news. When the twins are quiet, we know we are in for pure chaos,” Fallyn laughed.

Defying the odds

Fynn continues to defy the odds, and medical opinion.

The twins turned three in July, and the journey since their premature birth in 2022 has been incredible, and inspiring.

“Because of Fynn’s size when he was born, he was flagged high-risk for cerebral palsy,” Fallyn said.

“We had lots of monitoring and early intervention therapies while he was quite young.

“About 18 months to two years ago, he was formally diagnosed with right hemiplegic cerebral palsy. “It was affecting just his right side, mainly in his right ankle, and affecting how he was using his right hand,” Fallyn said.

Recently, Fynn’s diagnosis was changed to quadriplegia cerebral palsy and his left ankle and left hand are now affected.

“We do a lot of therapies and we’re in Tamworth once a month for physio and speech therapy for him. He has occupational therapy fortnightly, which is more about moving to life skills,” Fallyn said.

Fynn wears an ankle foot orthosis, a supportive device used to improve stability, correct foot and ankle alignment, prevent deformities and enhance mobility.

Orthoses provide a stable base, improve balance, and maintain a functional position for the foot and ankle, particularly when the hands and arms are also affected.

“We have a lot of trips away, and link up with a paediatrician every six months,” Fallyn said.

“We also meet up with a rehab team, which has specialists that have an interest in cerebral palsy and children with the condition.

“We see them annually in Tamworth. He has his NDIS funding, which covers his AFO, which he wears on his right leg. We’re in the process of trialling it on the left leg as well, just with the way he’s moving and to keep his hips aligned,” Fallyn said.

Thank-you Moree Lions

Fallyn and Travis are thankful their work allows them to make frequent trips away for Fynn’s ongoing treatment and therapy.

They are also eternally grateful for the kindness and support shown by the Moree community, especially the local Lions Club.

“Moree Lions helped us out about 12 months ago, with a donation to help with the costs of travel,” Fallyn said.

“Sometimes we stay overnight in Tamworth and sometimes it’s a day trip, depending on our work schedules.

“It’s tough. Thankfully, Travis has his own business, so that’s flexible, and my work is very flexible as well around whatever we need to do for Fynn.

“There are lots of hours of therapy and work to make sure he has the skills to be able to lead a normal life,” she said.

Moree Lions Club’s Beth Hearn said the local organisation is there to help families through difficult circumstances.

“Little Fynn’s condition means there are lots of visits to doctors and specialists to help with his therapy,” Beth said.

“The Lions in Moree decided to help Fynn and his family with travel expenses to medical appointments – costs associated with this can mount up at an alarming rate.

“We will make a donation annually to give the family a hand to fulfill their commitments and appointments.

“There is a lot of travelling. Initially, I think they were going to Newcastle and now they travel to Tamworth every four weeks for Fynn’s therapy.

“I hadn’t seen Fynn since his birth, but when Travis and Fallyn and their family came to the markets to say hello, and Fynn had Addie with him, it wasn’t hard to work out who was looking out for him,” Beth said warmly.

“They are a beautiful, beautiful pair.”

Moree Lions has this year also helped a family whose child needed a wheelchair.

“We were only too happy to help out, and if we hear of anyone in need and there are families having difficulties, Moree Lions will assist wherever we can,” Beth said.

The journey continues

For Fynn, there is a long road ahead.

But it will be a little less bumpy having Addie, Riley and Noah, mum and dad, and a pride of Lions by his side.

They are taking every step with him. Addie is by his side, leading the way.

“Cerebral palsy is lifetime,” Fallyn said.

“Ultimately, our goals for Fynn are to keep the muscles stretched, and continue whatever therapy he needs. Potentially, he will need Botox injections to help the tightness in his ankle.

“Botox helps relax the muscles. But the muscles can become too tight, and if we don’t do these exercises, it can cause a lot of pain and affect his ability to walk.

“Even still, he may need walking aids as he gets older for long distances, and we hope to build his skills so Fynn is able to lead a normal life.

“Initially, we were told he wouldn’t, but he’s defied everything the doctors and neurosurgeons have said so far,” Fallyn smiled.

Words and Images: Bill Poulos