Bolani family, helped by Telethon-funded support group, donate holiday money to help sick kids

WA’s generous and caring spirit will be celebrated this weekend as Telethon raises money for children in need across the State and beyond.

The unique and special fundraiser has generated a staggering $350 million in donations over the past 53 years.

Despite the difficulties faced by everyone this year, West Australians’ ability and desire to keep giving has not been dented.

Telethon chairman Richard Goyder said that while fundraising and donations were important, this year’s new-look event was also about bringing the community together.

“In a year like no other, we are excited to deliver a new Telethon for West Australians, to spread a positive message and remind everyone what a resilient and generous community we are when it comes to protecting the health and wellbeing of our children,” he said.

“I believe Telethon brings out the best in all of us as WA’s most trusted and loved charity institution and I look forward to seeing what we can achieve as a united community.”

Telethon is one of the most successful and enduring charities in the world and the biggest-raising telethon per capita globally.

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Its two major beneficiaries are Perth Children’s Hospital and world-class research centre the Telethon Kids Institute.

With more than 50 beneficiaries annually, thousands of children and their families are supported by Telethon year after year.

Telethon will be held tonight and tomorrow, with live evening broadcasts on Channel 7 from Crown Theatre. Tonight’s broadcast will run from 8.30-11.30pm. Tomorrow’s broadcast starts at 6.30pm and goes until 8.30pm.

For the first time, there will be a Telethon Family Festival at Optus Stadium from 11am to 5pm. Children enter free and adults can get $5 tickets at ticketmaster.com.au.

There will be free rides and entertainment, as well as performances and food trucks.

The Telethon call centre will be open all weekend to take donations.

Every year two children are chosen to be the Little Telethon Stars, becoming the faces of the fundraiser and a reminder of why the fundraiser is so important.

Nora Holly was diagnosed with neuroblastoma at eight months old. After surgery and six months of chemotherapy, the five-year-old has been in remission for four years.

Eamon Doak has Usher syndrome. The seven-year-old was born profoundly deaf and faces losing his eyesight by the time he is a teenager.

Parents Tarryn and Nayyer Bolani exemplify the generous spirit of West Australians.

The Kelmscott couple wanted to give back and thank Perth Children’s Hospital and support groups funded by Telethon for their help after their baby son Yasir became critically ill.

The past year has been nothing short of a nightmare for the Bolanis.

After an uneventful preg-nancy, Mrs Bolani became seriously ill during labour.

She developed severe pre-eclampsia and needed an emergency caesarean.

Yasir was born six weeks early 13 months ago. After three days in intensive care, Mrs Bolani woke to the news that Yasir had Down syndrome. When Yasir was two weeks old, he developed breathing difficulties and spent three weeks in hospital where two holes in his heart were discovered.

A routine cardiac appointment at Perth Children’s Hospital then turned into a four-month stay for Yasir and his parents.

The little boy’s condition had deteriorated and he needed open-heart surgery.

“It was difficult,” Mrs Bolani said.

“We were just in shock. We never really caught a break. When we were in hospital, it was always one thing after another.

“He was a sick little boy for quite a while.”

After the surgery, Yasir fought for his life on a ventilator in intensive care for three weeks before he pulled through. Mrs Bolani said their heads had been kept above water with the help of family, friends, hospital staff and three support groups, which are funded by Telethon.

Heartkids is a charity that supports families of children with heart conditions.

Mrs Bolani said Heartkids workers came to see them regularly in hospital.

Heartkids also holds morning teas so families in similar situations can connect and support each other.

Mrs Bolani takes Yasir to playgroups organised by Down Syndrome WA with other families with children with the genetic disorder.

She said the family had also had a lot of support and advice from Kalparrin, a centre for families caring for children with special needs.

“To think that we’ve actually survived this,” Mrs Bolani said. “Our mental health has taken a battering. From being told I’m having a healthy pregnancy and everything’s fine, to not being OK.

“I don’t think we’ve got over the shock of that.”

As another way of thanking everyone who has supported them and their “happy little boy” over the past year, Mr and Mrs Bolani have donated $1000 to Telethon.

“We all have our unique stories but we just wanted to make a bigger donation,” Mrs Bolani said. “We were planning to go to Pakistan because my husband is from Pakistan but we can’t go anywhere, so we thought why don’t we just give back because it’s definitely worth it.”

Mrs Bolani said the couple were also very thankful to the Saborne family and Mr Bolani’s colleagues at Primo Moraitis Fresh for their support.