Gemika's mission of mercy
Looking at the smiling face of Gemika Tonga you wouldn’t know that there was anything wrong with her. But Gemika has a rare genetic condition called Cornelia de Lange Syndrome (CdLS) that affects both the physical and intellectual development of a child.
Gemika is 4 ½, but according to her mum Gemma Roberts, she has the mind of a 2 ½ year old. She also has epilepsy, having up to 30 epileptic seizures a day and has to wear a helmet to protect her head. She is also on the autistic spectrum.
“Not many doctors in Australia know about the syndrome. When we have to take her to hospital they have no idea what I’m talking about and have to go and look it up,” Gemma said.
The syndrome is thought to occur in about only 1 in 10-30,000 people and there are maybe only 600 people in Australia with it.
Which is why Gemma is trying to get to the Cornelia de Lange Foundation Conference in Dallas, Texas in June.
“They would do a full consultation, head to toe and give us some idea about how to deal with the syndrome in the long term... There are apparently about 600 kids in Australia (with CdLS), but only about 100 kids getting help, because we don’t have the understanding. People are undiagnosed or wrongly diagnosed and I want to be able to get the knowledge I need and want to be able to work so people know about it and are able to support it. We’re learning every day,” she said.
Gemma said the conference in Texas would also allow them to network with other families who are dealing with the syndrome.
In order to get there Gemma and her husband Sione Tonga are trying to raise $25,000. That’s a lot of sausage sizzles and raffles, but they said they have been getting fantastic support, particularly from the Aboriginal community in Lismore.
They also have the support of the NRL’s Gold Coast Titans and Queensland Cowboys because two of Gemika’s uncles, Willie and Esi Tonga play for those teams.
As part of the fundraising efforts, there will be a lunch at the Lismore Workers Club on Friday, May 28, from 12 to 1.30pm. Tickets are $70 per head and they will also be auctioning NRL football boots donated by Johnathan Thurston and jerseys from the Indigenous All Stars team and other items on the day.
To attend or to make a donation to get Gemika to the conference, you can call Gemma on 0411 269 321.