Let's get Ellis walking like the rockstar he is!

Honestly, this guy — part pork chop, part stunt man, all heart. We first met Ellis when he started at Palm Beach State School with our son. Since then, our families have become great mates and we’ve been able to see what everyday life looks like for The Masters crew.

But let me start at the beginning.

Ellis was born in April 2016, a super chonk at 4kgs! All was going well until at about 8 months old, Kelly started noticing Ellis’s legs were a little ‘stiff’ and he was missing gross motor milestones and she suspected he may have Cerebral Palsy.

Fast forward through a whirlwind of MRIs, specialist appointments, genetic testing, crying in the shower and about 18 months later, Ellis was diagnosed with Spastic Diplegic Cerebral Palsy.

You can google CP but it’s a very nuanced condition and varies greatly between people. But in short, Ellis’s legs were going to give him strife for the rest of his life.

Since his initial diagnosis (and in fact, before), Ellis has been undertaking weekly therapies — occupational therapy, physio, exercise physiology, speech, hydro. It’s sometimes gruelling and means Ellis is in therapy most days of the week.

The main goal for therapy has always been ‘independent walking’. You know, the thing most of us do every single day without giving it a single thought? For Ellis, that is a complete mission.

But Ellis’s hard work in therapy paid off, and last year he took his first wobbly steps independently — cue more tears (happy ones this time).

But it’s not all rainbows and high kicks.

The reality is, day to day, Ellis still crawls around his home, uses a mobility walker or his canes and a wheelchair for long distances.

But Ellis is an adventurer — he wants to jump off all the things, play tackle footy, run fast at anything and everything. You know, standard 7-year-old stuff.

And into the future, Ellis’s family want him to live an independent, full and productive life.

Ellis’s parents, Jade and Kelly have thrown everything at Ellis’s CP. So, when they found out about SPML surgery, they knew they had to give it a shot.

SPML surgery could change Ellis’s life.

SPML stands for Selective Percutaneous Myofascial Lengthening — the surgeon makes tiny incisions into Ellis’s tissue to release the spasticity in his legs.

The result?

Ellis’s legs will be less ‘tight’ and ideally, he’ll be able to achieve a better heel-toe gait (Ellis’s heels haven’t seen the ground in years!). He’ll also be more comfortable in general and be able to move his legs in ways you and I can, without pain or restriction.

To be clear, SPML is not a ‘cure’ for Ellis’s CP - Ellis’s legs will still work differently and he may need SPML again in years to come as the effects may wear off.

SPML surgery is currently only performed by four surgeons worldwide — one in Greece and three in the US. After extensive research, Kelly and Jade have decided to have Ellis’s SPML surgery performed by Dr. Yngve in Houston, Texas and they are booked for March 28, 2024.

Because they’re not US citizens and the surgery isn’t covered by the NDIS, Kelly and Jade will be paying for the surgery themselves.

The Masters will have to stay in the US for three weeks post-surgery so Ellis can have weekly changes to the casts on both his legs. So Kelly and Jade are trying to make it feel as much like a ‘holiday’ as possible during that time. They wanted me to make clear they’ll be paying for all other costs (flights, accommodation, car hire, activities etc) — this fundraiser is for Ellis’s surgery only.

Now let’s get this little legend living his best life!