The Upsee mobility harness, bought for just over $500, is enabling four-year-old Bohdi Pilat to walk, play footy and have fun with his family and friends.

A short video of Bohdi enjoying his first steps has gone viral on Facebook since it was shared by his family last week. 

Born with fluid on the brain after what specialists believed was a stroke in utero, Bohdi has undergone five brain and two kidney surgeries in his short life. His first operation was at just six weeks of age. 

WATCH HIS FIRST STEPS BELOW

A post-birth ultrasound found Bohdi would need surgery due to a blocked ureter tube, which was enlarging his kidney and a check-up at five weeks discovered fluid on his brain, which also required emergency surgery. An MRI found that fluid had caused brain damage. He was also diagnosed with Esotropia, a form of squint in which one or both eyes are turned inward.

He has a shunt in his skull to drain fluid from the brain because his little body cannot do it naturally. When blocked, further surgery is needed to release fluid from the shunt.

Despite the fact his parents Nina and Keenan were told Bohdi would never walk, talk or be able to feed himself – this cheeky and tenacious little boy is defying all the odds.

It is Bohdi’s sheer determination to achieve, coupled with the love and persistence of his parents, which has resulted in the four-year-old realising many ambitions.

“We don’t take everything (specialists) tell us as gospel. We were told he would never walk or talk. With hard work by ourselves and speech therapists, Bohdi proved them all wrong and began talking about 12 months ago,” his mother said.

“We were told he would never be able to feed himself ... he’s not only a good eater, he can use a fork and spoon. 

“We were told his mobility had been greatly affected ... he can crawl properly now, he uses a walking frame, although he hasn’t yet mastered how to turn corners, and now we have the Upsee,” Ms Pilat said.

During their extensive online research on Bohdi’s condition, the Pilats stumbled across testimonials for the UK-made device, the Upsee, a three-part apparatus that includes a harness and special sandals for feet. The mobility device allows children with mobility impairment, like Bohdi, to stand and walk with the help of an adult.

“When we saw these testimonials, we were hoping this was the device we were looking for,” Ms Pilat said.

At a cost of $545, the Upsee price was a “drop in the ocean” compared to the thousands of dollars the Pilats have already spent to improve Bohdi’s mobility.

“The Upsee is not a therapy tool, but more for social interaction. It will, however, help to improve his muscle tone,” Ms Pilat said.

“He has a walking frame, which helps a lot. He is still learning how to use it and, while he is fantastic at going in a straight line, he still has to master turning corners.”

What the Upsee will mean for Bohdi is he will now be able to be truly involved in social events, like family gatherings, parties and get-togethers.

Bohdi, who attends day care and is also in three-year-old kindergarten at the Ballarat Specialist School, is a social little boy who only wants to be able to play with other children, especially his older brother, six-year-old Kaleb.

“(Bohdi) is always on the ground when we have events ... all he wants to do is be able to run around with his brother, with other kids.

“With the Upsee, he uses our legs to help him get around, to kick the footy,” Ms Pilat said.

“He is a very funny boy who is happy all the time. Given the heartache he has been through, he is never angry.”

kim.quinlan@fairfaxmedia.com.au

A FUNDRAISING event is being organised to help the Pilat family buy an electric wheelchair and suitable transport vehicle for Bohdi.

The Every Little Step trivia and auction night will be held from 7pm on Friday, August 15, at the Sebastopol Bowling Club.

Tickets cost $20 each, for a table of 10. Nibbles will be provided on the night, which is being hosted by Ballarat radio announcer Paul ‘PT’ Taylor.

For more information or if you would like to donate goods for the auction, phone organisers Fiona Hart on 0412 185 313 or Rebecca Whelan on 0418 873 072.

Donations can be made directly to Bohdi’s account – NAB smart junior saver – Bohdi Josh Pilat 083-532 18-762-8614.