Salamander Bay family seeking to raise $50,000 to fund life-changing stem cell therapy for for their baby boy, Ari

The 16 month old who was born blind and is profoundly deaf, who has Optic Nerve Hypoplasia, a global delay and hormone deficiencies, has spent large chunks of his short life in hospitals but he might well be one of the happiest babies you meet.

"He loves Twinkle Little Star. He claps his hands and mimics it back to you when you sing it," Ari's mother, Jamie Bennett, said.

"He loves hearing his name. When you say it to him, he smiles.

"He loves the feeling of the wind on his face. That also makes him smile. He loves to roll around and play with his feet.

"He's come so far."

Ari is Mrs Bennett's fourth child - all boys. He follows Cooper, 15, Astin, 7 and Lleyton, 5, all of whom "adore" their baby brother.

Mrs Bennett said she felt something was off with her pregnancy with Ari but doctors reassured her all was well.

Her instincts proved to be right. When Ari was born he spent weeks in the NICU with a punctured lung. At eight weeks, concerned with his sight, Mrs Bennett took Ari to John Hunter Hospital.

"He wasn't tracking anything," she said. "I'd raised it with doctors before but they told me everything was okay. I knew it wasn't. I went to the hospital and demanded someone look at Ari. They finally did."

That's when Ari was diagnosed with Optic Nerve Hypoplasia - the under-development or absence of the optic nerve which is often combined with possible brain and endocrine abnormalities. The disorder causes hormone deficiencies, which can be life-threatening.

Days following his ONH diagnosis, Ari's temperature spiked and he was rushed to John Hunter Hospital. He was then flown in a critical condition to the Children's Hospital at Westmead, accompanied in the helicopter by father Troy Bennett, where he was found to have bacterial Meningitis, causing him to go deaf.

"I remember just screaming," Mrs Bennett said. "Deaf and blind. I just thought 'what quality of life can he have?'"

During the two months he was in hospital the Bennett family were told to say goodbye to Ari four times. He developed seizures and had four strokes in his battle with Meningitis.

"I don't know how we survived going through that," Mrs Bennett said. "Doctors told us Ari wouldn't live through the night so we'd call family and say 'this is it' but the next day he would still be fighting."

Ari was finally able to leave the hospital after two months and return to his Salamander Bay home. In the past six months Ari's health and physical condition has improved immensely.

Attending weekly occupational and physical therapy sessions, he has gained back enough muscle tone to be able to support his own head, roll around and push himself up on all fours. He also plays with his feet, which is considered a major milestone in a child's development.

Ari was fitted with cochlear implants in February, which has improved his quality of life.

"Communication is hard because he can't see or hear," Mrs Bennett said. "But the implants have made a massive difference. He won't ever have perfect hearing but he hears something now. I was terrified of the future before but now that he's more mobile and has some hearing perception, I'm a lot less afraid."

In a bid to further improve his quality of life, the Bennett family have launched a GoFundMe with a goal of raising $50,000 to get Ari to Thailand where he has been accepted to receive stem cell therapy from the reputable Beike Centre.

Mrs Bennett, who would travel with Ari to Thailand should they meet the fundraising goal, said stem cell therapy was changing the quality of lives for those living with ONH.

"Very few conventional treatment options are available for patients with ONH. Most are just to help cope with the disability and not treat it," she said.

"Stem cells have the ability to regenerate nerve cells in the optic nerve, allowing patients to gain some vision.

"We know he won't have full vision but it could give him shadow perception - something to improve his quality of life.

"We know that this is a lot of money but we cannot pass up the opportunity to try to help our little boy gain something back."

Donate: gofundme.com/f/aris-fight-for-sight

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