By Beckie Wilson
Masterton man Philip Gibbs may never have spoken a word in his life, but it is no barrier for the 23-year-old who is “fiercely independent” and relies on his cell phone and Facebook to communicate.
For his parents, Roger and Annemarie Gibbs, they are unsure if Philip’s case is a matter of can’t or won’t speak, but after years of speech therapy, they “have just assumed it’s more that he can’t”.
“If he hasn’t developed speech by now, we don’t think he ever will – but miracles do happen,” Mrs Gibbs said.
“It would be my dream…”
Philip may not directly answer a question, but he understands and responds usually with a head nod or shake, or a hand signal – coupled with a grin.
At eight years old, Philip was diagnosed with Worster Drought Syndrome, a type of cerebral palsy that affects muscles around the mouth and throat. It restricts the movement of the tongue, lips and jaw resulting in problems affecting speech and feeding.
It is thought to be due to an abnormality in the brain that develops at 12 to 16 weeks of pregnancy.
For first-time parents, they “didn’t know what was going on” with the day-to-day caring of their new born being simply trial and error.
“At 10-weeks old he had failed to thrive because he wasn’t growing as he couldn’t eat… he was screaming all the time because he was hungry but I couldn’t feed him.”
When they were told by specialists that Philip may have neurological damage at about 10-weeks, they were advised to “take him home and do our best”, Mrs Gibbs said.
Then, when he was 10 months old, they started him on an intense therapy programme to help improve his physical and neurological development. “It was a kick start for him, and it got him moving,” Mr Gibbs said.
Philip taught himself to read at three, and “was never a toddler who picked up a book the wrong way”, Mrs Gibbs said.
Philip also has a younger sister Chiara, 21, who currently works in a pharmacy in Dunedin after studying pharmacology at university.
The Worster Drought Syndrome is often seen as a spectrum. Some may speak and not eat, others may eat and not speak, Mrs Gibbs said.
However, the syndrome often goes undiagnosed for a long time, or misdiagnosed as autism early on.
“A lot of his symptoms now that he is older fall into the autistic spectrum. That’s generally how we think of him,” she said.
“But it’s actually the lack of speech that comes from the lack of muscle tone and control through his mouth and tongue.”
Unfortunately, specialists in New Zealand couldn’t diagnose him, as the syndrome was rare at the time, with about three other cases known in the country.
The couple took matters into their own hands and researched Philip’s symptoms online, narrowing it down to the syndrome.
They made contact with an online Worster Drought Syndrome support group in the United Kingdom as they felt they needed an official diagnosis, and support.
“They were having a family day to meet all the families with children with the syndrome, so I decided I was going over to do that.
“I decided while I was there I was going to meet Professor Neville [a WDS specialist] and see what he thinks.”
It wasn’t until Philip was seen by Professor Neville, the world leading specialist at Great Ormond Street Hospital in London, that he was officially diagnosed.
Philip was mainstreamed from kindergarten right through to the end of high school, where he attended Wairarapa College until he was 21.
Even though he doesn’t speak, he was still able to participate in school activities. He even passed both NCEA level 1 and 2, but like anyone else he struggled with a couple of subjects and concepts.
He is a popular member of the Masterton community whether it be through his volunteer work at the Salvation Army store, SPCA, or through his involvement with Masterton’s IDEA services.
The service assists people with intellectual disabilities and involves them in the community through activities that benefit their learning.
Mrs Gibbs said whenever they are down the street, there isn’t a time that goes by without a handful of people saying hi to Philip.
“Ideally, we would love people in the community to know that that is Phil, and that he does understand them, and that they can talk to him and that he’s not deaf,” she said.
“He’s a pretty happy, easy-going young man.”
