YOUR son may never walk.
These were the words that Vera Moura was told about her three and half year-old son Franki.
“It was a pretty normal pregnancy, after he was born at about nine months I noticed something was different about Franki,” she said.
“He should be acquiring these milestones, he should be looking at me but he was looking through me, having no eye contact.
“Doctors weren’t really tactful in their delivery of diagnosis because they didn’t know what was wrong, they just said he was delayed and to see how it goes.
“It was really hard, I felt like I was in limbo the whole time, how do you move forward from that.”
After several diagnoses including Franki potentially being blind, at 21 months he was diagnosed with rare genetic disorder KAT6A Syndrome.
At the time of Franki’s diagnosis only 107 people had been diagnosed.
Franki is currently participating in his second RehabMe Intensive Collective.
The RehabME Intensive Collective brings together different therapists for three weeks of intensive therapy.
Mrs Moura said without the suggestion to see physiotherapist Tristan Hunter by a fellow mother from Saba Rose Button Foundation, she is not sure what situation Franki would be in.
“We switched from an old physio who was not really engaging in my need for more intense physiotherapy,” she said.
“Within a month or two of doing physio everyday he was sitting up; I was like we are onto a good thing.
“We applied for a grant from the Saba Rose Button Foundation so Franki could do intensive therapies, prior to that he has done NAPA over east and we were contemplating going to America.
“We couldn’t keep it up, even though we knew it benefitted him there was a lot of guilt, RehabMe has changed our world.”
Franki has passed milestones like crawling and now he has begun walking.
Mrs Moura said there is not enough awareness of children with this condition because they make up a small percentage.
“These children can teach us a lot about ourselves, I am patient, I’m kinder, I’m a better person for having Frankie in our lives,” she said.
“These little people are important too, they deserve our awareness, they deserve our funding, there deserving to be here and living there lives just like you or I.”
She said she hopes more people would come up and say hi and learn about their family.
Founder of the Saba Rose Button Foundation Krist Button said a few years ago it would be a dream to have this set up.
“We have 25 families participating this time, we already have one planned for January with 40 families and 14 therapists,” she said.
“We have seen quite a few children find their voice, we have had three children who have walked for the first time at these sessions.
‘Whether it’s those big milestones or the one percenters it is giving the child the best opportunity to work to the best of their potential.”
East Fremantle’s Swan Yacht Club has hosted the RehabME Intensive Collective.
On Friday October 18 the Saba Rose Button Foundation will host the rehabME Ball at the Crown Towers, to receive a booking form to book your table/tickets, please email laura@sabafoundation.org.au.
The RehabME Intensive Collective is made possible through the Saba Rose Button Foundation and Step Ahead Physiotherapy.
All photos are by Leon Shaffer via http://www.leonshaffer.com
Leah Roberts 