Our story of Ben – our warrior xxx

Update posted by Jenni Boyce On Oct 13, 2017

Today marks the 7th day and the first week out of hospital and back at home x

It's been a busy time filled with Physio, OT, speech therapy and today... a first swimming lesson! Which was amazing to witness x x

We have all been overwhelmed with emotion at the brave and passionate approach as Ben the warrior takes all these challenges head on and as always - with a smile.
He keeps saying 'I'm so happy' ❤️❤️ Of course happy doesn't even begin how we all feel. Neither does grateful. Or blessed. There actually just aren't words. Often just tears of joyand an embedded sense that we are all changed by this journey and that an amazing gift has been bestowed upon us - we are the humble spectators of what is truly a miracle.
Wishing you all a love-filled weekend with your families x x x I know ours will be ❤️
#teamben

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Update posted by Jenni Boyce On Oct 13, 2017

We are out of the hospital and finally back at home!

After 7 weeks to the day in hospital, Ben the Warrior has finally come home. We are all immeasurably grateful and continue to watch in awe as every day, our little guy, full of smiles and love, shows incredible grit and determination as we embark on the long road of full rehabilitation.

Ben’s out of hospital treatment, for the foreseeable future will include:

-Daily Physiotherapy (for building core strength, full use of his left side impacted by the paralysis, and building new neuro-pathways for all gross motor skills impacted largely by the haemorrhage on his basal ganglia)

-3 x per week Occupational Therapy (which is upper body coordination, fine motor skills including learning to write again, and scholastic development – the full spectrum from mathematics to the alphabet and everything in between!)

-2 x per week Speech Therapy (the paralysis doesn’t just impact external limbs, but also the internal organs including vocal chords – the therapy rebuilds both the muscles as well as neuro-pathways to relearn swallowing and speaking)

-2 x per week Play Therapy. Although one may not realise, the trauma suffered spending 3 weeks in an ICU environment, having to relearn basic skills and the psychological impact of what Ben has been through is massive. The Play Therapy is essential to his psychological well-being associated with these traumas.

-3 x per week swimming lessons – yes, along with all the other abilities Ben needs to relearn to swim! This is also an awesome complimentary exercise for physio in building strength and endurance.

Not only are all of these therapies absolutely essential, but they do come at a cost – both monetary and from a time point of view – all are done at therapy centres outside of home and cannot always be run consecutively due to over-exertion, stress and tiredness being major triggers for the on-going threat of seizures.

Which highlights the next consideration regarding the crazy daily medicinal regime. Ben is on a number of anti-seizure and organ protection medications – a large portion of which are unfortunately not covered by medical aid.

Ben’s families agreed that it was in the best interest of Ben, his 2 brothers and the consideration given to the huge time commitment all this takes, that his mom, Olivia would take a medical sabbatical to dedicate both the last few weeks that Ben was in hospital and the next 6 weeks following this, to rehabilitate their son. Ben will only go back to school next year, and requires full-time care until that time.

Following the incredibly generous contributions received during Ben’s stay in hospital for the co-payments for the specialist treatment he received, we are now entering phase two of his full recovery and are looking for ways to raise funds to cover these therapies over the next few months.


Please keep an eye out for sponsorship opportunities as his Dad, James will ride with #teamben in the Wines to Whales, 94.7 Cycle Challenge and the Cape Epic.

We will also be arranging a Fun Walk aimed at children and families – most of whom are in our network already – with amazing children following Ben’s progress and recovery with so much love and concern.

If you have any ideas or suggestions – we would love to hear from you! And once again, to all of you incredible earth angels who have already made greatly appreciated contributions, prayed for Ben, sent love and showed the most heart-warming support – THANK YOU!

We could not be doing this without you.


We said right from the start of this life-changing journey, that Ben the Warrior would not suffer in vain. Let us hold close to our hearts our family and loved ones, knowing that time is our most precious commodity. Use it wisely, with love and kindness.

Much love always

#teamben

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Update posted by Jenni Boyce On Oct 10, 2017

A massive THANK YOU to Karen Neary for putting us in contact with the amazing team at EyeGym - who have generously sponsored Ben with a training program which will beautifully compliment his other therapies on his journey to full recovery.
Concentration is a critical component of rebuilding neuro-pathways - any "bad habits" formed during this rehabilitation can end up sticking if any re-learning of basic skills are rushed.
As an 8 year old boy, Ben's concentration was never something to rave about 🙈 and is now a really big challenge for him - we are so excited by the prospect of this amazing program assisting with this, spatial awareness and fine motor skills.
Once again we are blown away by the generosity and kindness of people during this time xxx
#teamben

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Update posted by Jenni Boyce On Oct 10, 2017

Day one of many for Ben the Warrior at this amazing little Centre. As with most places in life, it is the people here that make it so special.

We have encountered the most phenomenal healthcare professionals in the past 2 months - people with the magical combination of incredible skill coupled with heartfelt empathy.
For them, and all of you, we are truly grateful.
Much love always ❤️
#teamben

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Update posted by Jenni Boyce On Oct 10, 2017

Today was a good day x scratch that - today was a great day x
We've had such crazy mixed emotions getting our little warrior home.
Firstly, being the overwhelmingly kind and compassionate kid that he is, Ben was devastated to leave all the people who fell in love with him, and he with them. He wanted to go back to the hospital 🙈
Since then we have been somewhat scared and stressed about the enormity of the responsibility associated with his arm-length of medication, checking on him every 30 mins throughout the night to see he's still breathing and trying to prevent him from face planting every time he moves around the house.
But how could we possibly complain? We have our miracle child home. A once impossible consideration.
Ben, you continue to amaze us with your determination, progress and resilience.
You are so loved xxx
#teamben

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Update posted by Jenni Boyce On Oct 10, 2017

First steps.... for the second time ❤️
There have been endless tears of happiness today.
Not only did this miracle occur, but the most amazing, heartwarming, exciting and once unthinkable news... today Ben is being discharged!!! Exactly 7 weeks to the day xxx
Ben the Warrior is going home ❤️
Sending you and your family all the love and best wishes on the greatest and happiest Friday ever xxxx
#teamben ❤️❤️❤️

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Update posted by Jenni Boyce On Oct 10, 2017

"Look mom, no hands!"
We are on the precipice of an exciting and terrifying new chapter in the journey of Ben the Warrior.
This smiling, loving, inspiring little soul who has dictated each step, is taking us along for the ride - while we are humble spectators of the impossible made possible.
One of the most profound lessons has been that we focus on massive outcomes as markers of success - and when you are told your child may not walk again, it's easy to become fixated on the 'first step', it's easy to forget that holding a crayon, eating yoghurt from a tub on his own, writing his name, recalling the alphabet, drawing a heart - are all magical milestones.
As with anything in life, great things are achieved through perseverance and practice.
Warriors aren't born, they are created, through bravery, ritual and an abundance of love.
Beautiful child of ours, you have so much love, the rest is the pure magic of who you are - and we couldn't be more inspired if we tried.
Thank you for choosing us.
You've got a whole team behind you, always ❤️ https://www.facebook.com/116324449074543/videos/12...
#teamben #peace


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Update posted by Jenni Boyce On Oct 10, 2017

Journey Update

Today I checked the calendar in order that I could accurately recount the dates applicable to this update.

Ben was admitted into the pediatric ward on the 18th of August at lunch time. The blood test and Lumber Puncture was done around 4pm. At 6pm the paediatrician came to see us advising she had already commenced aggressive intra-venous antibiotic treatment for meningitis.

We assumed at that point that although this was a terrible infection to contract, with treatment, we would be out in the next few days.

What ensued over the 6 weeks that followed has been the most terrifying, eye-opening, life-changing and ultimately miraculous of our entire lives and went beyond anything we thought we would feel in both ends of pain and joy in our lifetimes.

This journey has brought out the best and worst in us, it has shown us the incredible power of a collective conscious in humanity with unthinkable numbers of people – both known to us, and caring strangers from across the world, pouring love and well-wishes into our little warrior.

What we have witnessed is nothing short of a miracle. After 15 days on life-support and a total of 3 weeks in ICU – we are back where we started – in the paediatric ward where Ben the Warrior continues to break ALL the rules.

We were advised that the brain damage resultant from the haemorrhage caused by both the infection and the stent had affected his right frontal lobe (left side of the body) and his basal ganglia (speech). We were being told to prepare for a lifetime in a wheelchair with a feeding tube into his stomach.

Precisely 11 days after getting Ben out of ICU – because “there is nothing further we can do for him medically”, we have had the absolute privilege of watching this little warrior defy all these odds, little by little, step by step, word by word and for close on 99% of the time, with good humour and a gentle patience he grants himself and all those involved.

The purpose of this update serves a few purposes:

To thank every single person who has made a contribution to assisting Ben in getting to his point. There are significant co-payments and costs associated with the (6) Plasma Transfusions Ben underwent in ICU that we simply could not have done without you
To thank every single person for all the love and well-wishes – which he (and all of us) have felt every single day.
To share with you the decisions we have made as a family to see Ben through this gruelling rehabilitation and on to conquer his dreams.
With the on-going threat of seizures (and working on a maintenance plan to get these under control with a longer term view than a central line), along with the intensive Physiotherapy, Speech therapy and Occupational Therapy Ben will need for the next 6 – 12 months, we decided that it would be best for Ben if Olivia – his mom – took a medical sabbatical from her business to see him through this initial phase.

Whilst James and Vanessa are obviously unwaveringly committed in equal measures, the decision was made in the best interests of the family as a whole. Ben has 2 older brothers who he idolises and adores and their well-being is of equal concern.

The plan is to get Ben out of the hospital and home as soon as responsibly possible – where all these essential therapies will continue in comfort and safety.

As a family, we know this is the best possible decision for Ben. We would love to continue this journey will all your on-going love and support to make this all possible and will ensure that you are all kept up to date with the achievements, good days and tough days as we are humbly aware of your vested interest in the same.

All contributions will remain transparent and the investments in Ben’s recovery will also be shared regularly.

Thank you again from Ben the Warrior and from all of us.

It is impossible to know how much someone means to you until the day you realise – you may not have time to show them just how loved they are.

#teamben

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Update posted by Jenni Boyce On Oct 02, 2017

A practical update for all of you incredibly supportive fans and loved-ones of Ben the warrior xxx

Today we switched the last of the IV meds to oral. (Apparently tastes terrible!!!!) it is an essential one (of many - like, 12 per day) forseizure treatment so can't be avoided.
The brilliant thing is that with no reliance on IV, should Ben respond well to the current meds mix, we can remove the central line and work on getting him home ❤️
As always, we take our guidance from Ben - who let us not forget, removed his own feeding tube and told us whenthe permanent vital-sign monitoring was no longer welcome nor needed 😂

Today we bumped into his incredible neurosurgeon (on a hospital cruise in a wheelchair) . A kind, incredible man who reminded me - if he didn't see this with his own eyes, he would never believe it. He owes ben a soccer ball apparently

Sending massive love and strength to all of you from all of us. Be kind. Always.
#teamben #peace

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Olivia, James and Vanessa and Ben I read this with absolute happy tears in my eyes. We serve a Great, great Father who knew Ben before us and chose you to be his parents. Every time I read h Ben’s progress I’m blown away. You are a magical team and Ben could not do this without you. When I saw Ben in hospital my heart just sunk. So grateful that he has made it this far. The best is still to come.

Jenny Hibbert

Update posted by Oct 02

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Update posted by Jenni Boyce On Oct 02, 2017

Have a beautiful day people #TEAMBEN💙

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Jenni Boyce

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jean-philippe ruegg

Backed with $10.00 On Oct 13, 2017

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Vicki Lauter

Backed with $100.00 On Oct 13, 2017

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Good Going Ben - We're so happy to hear your latest Progress and that you are getting released today. Awesome AWESOME news.

Barry @ Angela Rash

Backed with $168.00 On Oct 06, 2017

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Wishing all the best Ben! You're an inspiration to us all. Love Nicole and Felix xx

Nicole Lavagnino

Backed with $50.00 On Oct 04, 2017

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Get well soon, Ben the Warrior!

Susanne Robert

Backed with $50.00 On Oct 03, 2017

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I have been following your story since Bryony first posted on Facebook a few weeks ago. Hope this goes some way to help with his recovery. Brave boy - brave Mum.

Georgina Peacock

Backed with $25.00 On Oct 03, 2017

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Guest

Backed with $22.00 On Oct 02, 2017

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Praying for this very special boy!!!

Lize Fernandez

Backed with $200.00 On Oct 02, 2017

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Chris Cilliers

Backed with $100.00 On Oct 02, 2017

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Anonymous

Backed with $150.00 On Oct 01, 2017

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