An Eltham family are hoping to travel to America this year to learn more about their four-year-old son's rare condition.
A conference on Stickler Syndrome (hereditary progressive arthro-ophthalmopathy and genetic malfunction) will take place in July, giving the Kiser family the opportunity to meet other families living through a similar experience.
Going to playgroup with her baby Lucas, and enjoying a coffee and chat with friends Sonia Kiser would not just be looking for a safe place to change or feed her baby, but also a space where she could try to put contact lenses in her six-month-old's eyes.
"It was certainly overwhelming not just for me but for the other parents who saw it."
This challenge was just one of many after Lucas was born with Stickler Syndrome and glaucoma.
Lucas faces a range of health challenges, including cataracts, severe short sightedness, hearing loss, flat feet and had a detached retina in his left eye in which he currently has no sight at all.
In the first months after his birth Sonia and her husband Michael were constantly at the local doctor's surgery seeking help for a baby who frequently had what was thought to be conjunctivitis.
"He was crying a lot as well, and when Lucas was about four months old Michael noticed Lucas's right eye appeared cloudy."
Sonia says at this point they were referred to Greenlane Hospital in Auckland where Lucas was diagnosed with glaucoma and Stickler Syndrome. Michael and Sonia were told this would lead to many challenges in their son's future.
"He was just a few months old, and we were already being asked to consider that he may never be able to drive."
Since their first journey to Greenlane, Sonia and Michael have made over 50 trips to various hospitals in Auckland with Lucas.
At age four, Lucas has already undergone over 25 anaesthetics, sedations surgeries including glaucoma surgeries, cataracts, a lens implant and having a detached retina at the age of three and still not knowing if he has sight in that eye.
Sonia and Michael are looking forward to meet other families living with Stickler Syndrome.
"Talking to people actually living through this would be so helpful as it would give Lucas real answers based on life rather than text books, especially as he's going to start school soon."
These personal connections would complement the great medical care Lucas is receiving in New Zealand, says Sonia, who says special mention should be made of Pip Charteris and her team at Stratford Optometrists.
"Pip has been our rock! So knowledgeable, caring, kind and would do anything to help us".
Friends and family have also provided invaluable support to the family.
"We are so lucky to have such amazing family and friends and we really are thankful for all their support."
Despite all his health challenges, Lucas is a happy and friendly little boy, says Sonia.
"He is a lovely, happy boy who loves playing with his tractors and younger brother Andre despite the many complications his condition causes him.
As his parents of course we worry for him and his future. We know he has a hard road ahead of him, so making connections with other families will help us now and in the years to come."
Sonia says going to the conference as a family won't just help us, but the specialists who work with Stickler Syndrome and other families who may be diagnosed here in NZ.
"Lucas's condition is on the world stage. His case has already been discussed at medical conferences world-wide and this is the chance for him to be examined in person by some of the specialists at the forefront of research into Stickler Syndrome."
Family members have set up a fundraising page to help get Sonia, Michael, Lucas and Andre to the conference this year; To donate, visit givealittle.co.nz/cause/help-get-lucas-and-his-family-the-stickler