It’s December 2012.

Daniel Smyth is three years old.

His doctors are about to deliver some bad news to his parents.

Claire and Jonny sit and brace themselves.

They are no strangers to this, waiting for the doctor’s verdict.

By this point they are used to it.

They are used to being disappointed too.

Very few people ever give them the answers they crave when it comes to Daniel.

Daniel, their first son, was born with an undiagnosed genetic condition.

Nobody knew what it was.

No expert could label it or define it.

They knew he had profound and multiple learning difficulties.

They knew he had no speech, no mobility and no self-help skills.

And now the doctors knew something else.

Daniel was going to need surgery.

Major surgery.

His hips were the problem.

Their positioning had been getting worse in recent months.

He was under biannual review and the X-rays showed the signs weren’t good.

Daniel’s little hips were moving out of place because he was sitting all day, a fairly common problem in children who aren’t mobile.

firefly upsee harness

But Daniel would need corrective surgery, and it was going to be difficult for the whole family.

“As I understand it, they reshape the bone, repair the socket, then pin it back in to place”, said Daniel’s mum, Claire.

“He would be in hospital for a while and then in a cast for 6-8 weeks – he would be pretty much bed-bound for 6 weeks.”

The doctors wanted to hold-off for as long as they could, because the post-surgery benefits would last longer, but if Daniel’s hips continued to deteriorate, they were facing surgery within a couple of years.

Was there anything they could do?

Claire said, “We were told that the more we could get him onto his feet and weight-bearing the longer we could delay that surgery.”

But this wasn’t good news either.

Daniel didn’t like being on his feet.

“He never liked weight-bearing because his feet are so sensory-defensive, he hates that pressure on his feet.”

Any time mum and dad encouraged him to stand, Daniel would pull his feet up and away from the ground.

They couldn’t be sure Daniel’s standing frame, which he had been using for two years at that point, was helping either.

Claire said “He used the standing frame every day, for 15-30 mins, which took a long time to build up.”

“The problem with the standing frame was we didn’t know how much weight-bearing he was actually doing in it – he was a bit sneaky and managed to get the back straps under his bum so he could kind of sit on it.”

“That meant he wasn’t doing as much weight-bearing as he looked like he was.”

As well as working with the standing frame, every day they had practised kneeling exercises, tummy time, sit-to-stand, stepping, stand-to-sit, side-sitting and more.

Months passed.

By now, in March 2013, Claire admits she and Jonny doubted whether Daniel would ever stand or walk, and his surgery kept creeping closer.

It was around this time they heard about the Upsee.

At that stage, the Upsee was just a product in development but the family was invited to trial the prototype.

“I was a bit unsure,” Claire said.

“Looking at it, I didn’t think he would weight-bear in the Upsee, I thought he would just hang. We didn’t expect much from it, but we thought it might be fun and was worth a try.”

Daniel did just hang at first.

But the good thing was he enjoyed it, which was a big improvement on a lot of the other equipment he used.

firefly upsee walking harness

“Daniel just seemed to really love the sensation and the position he was in.”

“I think he liked the feeling of being close to me too, knowing I was right behind him and that he couldn’t fall.”

So therapy continued as before before, but now incorporated the Upsee.

It took a little getting used to but they were soon enjoying it.

And Daniel’s little brother, Charlie, could join in the fun this time.

“Well, Charlie loved it from the start,” said Claire.

“If Charlie ever tried to get involved in Daniel’s therapy before, he was always told he had to stay out of the way and go sit down because he might get hurt or get in the way – it was very difficult to involve him with physio.”

“But with the Upsee, he was able to stand in front of Daniel and kick the ball to him and we could kick the ball back – so he felt a part of it, which was really nice.”

“Jonny loved it too – he was surprised to feel how quickly Daniel began to take his own weight and even initiate his own steps.”

“And it just felt more fun, like we were doing something fun instead of feeling like we were doing homework.”

A few months later, the time for Daniel’s next hip review arrived.

Claire didn’t expect the outcome they got.

The deterioration in Daniel’s hip position, which had been getting worse with every review, had just stopped.

His hips hadn’t gotten any worse.

The doctor told Claire and Jonny whatever they were doing was working, and they should keep it up.

“The only thing we had changed was using the Upsee, we couldn’t believe the difference it had made,” Claire said.

So the family started using the Upsee at every opportunity.

Over the next few months it went everywhere with them.

It even gave Daniel the chance to play on the beach, which he could never do in his wheelchair.

Claire said “I used to have to take Daniel in his wheelchair and sit on the sidelines because we couldn’t go on the sand, but we could join in when we brought the Upsee.”

“Families came over to speak to us and the other kids thought the Upsee was cool and they wanted to try the it for themselves – that would never have happened when Daniel was in his wheelchair.”

weight-bearing-children-with-special-needs

Fast-forward six months to the end of 2013, one year after they were told Daniel would need major hip surgery.

The family went back to the doctor for Daniel’s next hip review.

They hoped and wished for Daniel’s hip position to have stabilised, that the last review wasn’t just a fluke or a one-off, and that there was a chance they could put the surgery back a little further.

The review showed that Daniel’s hips had actually moved back into their proper place.

“The doctors signed him off”, said Claire, “ they said they would keep reviewing him but for now he was in the clear and wouldn’t need the surgery!”

“It was amazing!”

A few months later, the final version of the Upsee officially launched and Daniel was one of the stars of the show.

As the person who had been using the product the longest, he was the perfect guy to demonstrate what the Upsee could do.

He smiled for members of the press who gathered to snap his picture when we unveiled the device to the world.

Within hours, Daniel’s image appeared on newspapers and websites all over the world.

That was almost a year ago, and while Daniel might still be recognised on the street from time-to-time, celebrity definitely isn’t the highlight of the family’s Upsee adventure.

therapy children special needs cerebral palsy

“Daniel stands almost completely independently now”, Claire said.

“He will use one hand to support himself but he is standing and before we got the Upsee we didn’t think that was a skill he would ever have – it’s amazing to see him in that position, just crazy!”

“It took time. We have been using it almost two years now but it has made a difference, he has achieved far more than we ever thought possible when we started using it.”

“And yes, in the grand scheme of things, he’s not walking and he’s not standing completely on his own, but he’s doing so much more than he was before.”

“Even if that’s it, even if that’s all the progress he ever makes, it’s still more than we ever imagined, and the fact that he has avoided surgery is just amazing, we are so grateful for that.”

A huge ‘thank you’ to Claire, Jonny, Daniel and Charlie for sharing their story and for being such an important part of helping us develop the Upsee.

We couldn’t have done it without you.

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