‘This is our last hope’: Couple fly to UAE after life-saving donation fails to materialise

Aziz and Caroline Rizk need $500,000 to help save their nine-month-old son

A Lebanese couple is desperately trying to save the life of their nine-month-old son, who suffers from the muscle-wasting disease spinal muscular atrophy.

Aziz and Caroline Rizk arrived in the UAE for one last attempt at securing their son Jayden's life-saving $2.1 million gene therapy injection, after their hopes were dashed when donations failed to come through.

Without access to Zolgensma, the world's most expensive drug, Jayden might not live until his first birthday.

The couple hoped to raise the entire amount through a GoFundMe page in Lebanon, until a donor pulled back on her promised pledge, leaving them $500,000 short of the total.

Mr Rizk refused to wait to secure more donations as it would delay Jayden's survival chances and risked flying him to the UAE on a ventilator, with hopes for a miracle.

I can’t describe the pain of a mother who knows she might lose her firstborn at any moment

Caroline Rizk,
Jayden's mother

"This is our last hope," Mr Rizk says. "As a parent, wouldn’t you do whatever you can to save your baby’s life? We know it was a risk [to fly him], but there was nothing else we could do."

Jayden, who weighs 4.6kg, has been strapped to the machines since he was born, with his parents taking turns monitoring his vitals and draining excess saliva.

Three machines monitor his breathing, food intake and saliva accumulation around the clock.

'I would do anything to save his life'

Jayden cannot lift his head but smiles every time he sees his parents.

"I can’t describe the pain of a mother who knows she might lose her firstborn at any moment," Ms Rizk says.

SMA is a genetic disorder caused by a missing or faulty gene that affects motor neurons – nerve cells that send messages to the muscles.

It causes progressive muscle weakness, severely affecting swallowing and breathing.

It can be treated by gene replacement therapy Zolgensma, which uses a genetically engineered virus to help restore some of the missing or nonworking genes.

Aziz and Caroline refuse to give up hope. Pawan Singh / The National

It is only available in a few countries, including Dubai's Al Jalila Children's Specialty Hospital.

Zolgensma "isn’t a cure, but a treatment", said Dr Haitham El Bashir, head of the Neuroscience Centre of Excellence at Al Jalila Hospital.

Since 2020, the team has treated nearly 90 patients, aged between four months and six years, from 13 countries.

There are four types of SMA, with Type 1, which Jayden has, the most severe.

"Type 1 is also the most common condition, affecting about 60 per cent of babies born with SMA," Dr El Bashir said. "It's usually diagnosed during the first six months of an infant."

If left untreated, SMA Type 1 will lead to death or the need for permanent ventilation by the age of two in more than 90 per cent of cases, he adds.

The lack of insurance coverage for the treatment also proves a huge challenge, Dr El Bashir said. Families often "raise funds through charities or support from the royal family", he added.

"We have also had lots of support from banks and other organisations."

The couple signed a do-not-resuscitate order, or DNR, in case of any eventuality.

“This was the hardest decision we have made in our lives,” says Ms Rizk. “But this isn’t a life for a baby … [to] be on a ventilator for his remaining days."

Aziz says the decision is "not what any parent wants to take. It felt like I was signing my death sentence".

Generous hearts

The couple is pinning their hopes for a miracle.

“To know that there's a treatment [to save your child] but you can’t get it, is torture," says Mr Rizk, adding that he will do "anything to save his life".

Mr Rizk said he begs for a "chance to experience [life] with our precious Jayden".

"We just want to see him take his first steps, hear his first words, and watch him grow. Every parent deserves that joy."