Telethon 2025: Identical twins Ethan and Edward Chen live vastly different lives but their bond is unbreakable

Of all the worries on a constant loop in Genevieve Chua’s mind—the kind of fears that come with having a severely disabled child—there’s one that’s physically painful to think about.

What would happen to her beautiful son Edward if she and her husband no longer cared for him?

Genevieve tried to hide these concerns from Edward’s identical twin Ethan, who would forever carry the burden of being born healthy alongside his brother who would never live a normal life.

That’s why it took her breath away when seven-year-old Ethan recently told her out of the blue: “Mom, before you die you have to teach me everything you know about Edward, so I can keep looking after him after you’re gone.”

As Genevieve fought back tears, she realized that Ethan had an innate instinct to protect and care for his brother, even though it was never and would never be expected of him.

“(His comment) was unprovoked, I never instilled any of that and it’s something I never wanted Ethan to do. It’s a huge thing to have such a severely disabled brother,” Genevieve said.

“Ethan has a very heavy burden to carry, and I’m doing my best not to put pressure on him. He came into this world not knowing that his brother had to be his protector throughout his life.”

“But in Chinese we say ‘this is fate’. It’s fate that brought them together.”

Edward has level four spastic quadriplegic cerebral palsy and a rare and complex congenital neurological malformation that can result in epilepsy.

He experiences the world very differently than Ethan, but the brothers share that magical, inexplicable twin bond; a shared understanding that transcends language.

“It’s not a bond that they can talk about and sometimes you can’t see it, but it’s an asset,” their mother explained.

“Edward is a lot calmer when Ethan is in the room. Ethan will look at Edward and see if he’s had a really rough day. If I’m stressed, he’ll come over and help, give Edward a hug, and then come over and ask me, ‘Are you okay?’ he will ask.

“We never taught Ethan what to do with Edward, but he seems to know and is very in tune with his brother’s needs. They don’t know each other in any other way, and I don’t think Ethan sees Edward as a liability.”

It is an extremely complex bond and will remain so forever.

Edward and Ethan set out as one; An identical twin pregnancy occurs when a single egg divides into two.

Genevieve and her husband Howard Chen were thrilled and shocked. However, as a result of a cruel, inevitable and completely coincidental event, abnormalities developed in the twins’ common placenta at the 25th week.

A scan at King Edward Memorial Hospital first revealed a discrepancy between the children’s weights, then it turned out that Edward had no amniotic fluid and Ethan had too much.

The babies were diagnosed with life-threatening twin-to-twin transfusion syndrome, which involves unequal blood flow to twins who share the same placenta. One twin receives too much blood, oxygen and nutrients, while the other receives too little.

Emergency intrauterine laser surgery was performed to save the boys’ lives before keyhole surgery allowed Edward to receive a blood transfusion.

“Then we were told to wait,” Genevieve recalled.

“We didn’t know Edward had made it. From then on, I think our lives were spent not knowing.”

The boys were born eight weeks later and initially Edward, the younger of the two, appeared healthy.

It was a great relief for the couple that she entered the world crying, but it didn’t stop as the weeks went by. A calm, composed, and contented baby, Ethan was the yin to his brother’s yang.

It took futile appointments with several different pediatricians and failed treatments for “reflux,” until one finally recommended an MRI of Edward’s brain when the boys were six months old.

“He had (extreme) convolutions in his brain, he looked like he had a stroke in utero, and he had major brain damage… there was a list of follow-up appointments, ophthalmology, physiology, neurology,” his mother said.

“That was the beginning, appointment after appointment. And it didn’t stop.”

First-time parents didn’t have the opportunity to pause and process how much their lives would change; their sons needed them.

Genevieve, who worked as a veterinarian before the boys were born, said her medical background gave her a realistic understanding of what the future held.

“In the back of my mind I knew life would never be easy for Edward and he would go through more ordeals,” she said.

She became her son’s advocate, seeking out the best therapists, learning to understand his needs and cues, and recently switching schools to ensure the boys could be together and both get what they needed from the experience.

You can often find Ethan playing basketball or talking about Pokemon with his friends and dreaming of playing in the NBA.

Edward uses a wheelchair, walker and standing aid at home, and most nights after school the siblings walk together on local trails near their home in Willetton, a ritual Edward loves.

“A lot of people say hi to him, he’s pretty famous around here. He also likes when people come over, he likes to listen to them talk. He likes to go on long walks and play basketball outside with Ethan,” Genevieve said.

Overcoming the many challenges of caring for Edward, who received food and medication through a percutaneous endoscopic gastronomy (PEG) tube into his abdomen following surgery last year, Genevieve was always aware of the impact this situation was having on Ethan.

His heart was split in two, just like that embryo.

“I’m so scared,” he admits. “I feel like this is beyond me, but then, if it’s not me, then who? Life is really unfair sometimes, it’s cruel to Edward; the idea of ​​him suffering from the moment he’s born.”

He remembers one night, when the boys were four or five, when they had to leave in an ambulance after Edward had a seizure and they didn’t have time to explain to Ethan what was going on.

“Edward’s face turned blue… I thought I had lost him. I didn’t even know what had happened, so I didn’t have the capacity to explain it to him,” Genevieve said.

“We had to go back and resolve this traumatic event with Ethan. He understands that sometimes I have to put Edward’s needs first. He is a very caring brother.”

Genevieve benefited from her own incredible strength and the support of the couple’s close Chinese and Singaporean family, including her husband’s parents, who lived with them.

The family is also supported by Telethon beneficiaries Hannah’s House and Healthy Strides Foundation, which provide respite, care and support to children with complex conditions and their families.

Genevieve said the Healthy Strides’ Kindy Moves program, which provides intensive therapy and rehabilitation for children and young adults with neurological conditions, has been a game-changer since Edward launched it five years ago.

“Edward hated therapy at the time, but it was a different type of therapy and we’ve been doing it ever since. It changed the way we looked at therapy,” she said.

“We’re so grateful to live in WA. Telethon has played such an important role in helping so many children in need, the generosity of the public is insane. It’s incredible to have such good support here.”

The family no longer plans very far ahead, and hasn’t since Edward’s diagnosis. Genevieve faces each day with unwavering love and a quiet determination to do the best for both her sons.

“I tell Ethan, there aren’t many people in this world who can form such a special bond with a brother,” he said.

“Edward brings everyone together, he’s the real reason our family is so strong. And honestly, our family wouldn’t be as strong if Edward wasn’t around.”

”Everyone in this family works hard to make the world a better place for Edward and Ethan.”