Our story of Ben – our warrior xxx

Update posted by Jenni Boyce On Sep 21, 2017

Ben's condition today reminds us of the delicate path we are walking and the drawn-out nature of his rehabilitation. With that said we would like to give heartfelt thanks for the generous and kind donations received thus far. With your generosity, we have been able to cover the shortfalls on the following treatments:

- Renal Care - well over R70,000

- Anesthetist - final figures not yet in

- Radiology - over R10,000 so far

- ICU Doctor - final figures not yet in

- ICU Trauma counselling - R4000

We will continue to keep you updated on your how your generosity has and continues to help Ben and our family in his fight to recovery.

With endless love and gratitude

#TeamBen


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Update posted by Jenni Boyce On Sep 21, 2017

Ben has had a rough morning today. He started presenting with mild symptoms of seizures yesterday and we adjusted his medication last night accordingly.

Today he spent 15 minutes in an epileptic seizure before we could call the neurologist from theater to administer a drug to stop this.

These aren't physical seizures - but neurological. The great danger for Ben in suffering these is the brain hemorrhage increasing and thereby increasing the existing brain damage.

Whilst we have all been inspired and excited by the progress our little warrior continues to make, today was a harsh reminder of the long and very scary road ahead.

We therefore appreciate every ounce of the ongoing outpouring of love and support we receive from each and every one of you.

Please keep Ben in your hearts, thoughts and prayers.

Love #teamben

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Update posted by Jenni Boyce On Sep 20, 2017

The sweet determination of this little warrior. Perhaps the most astounding quality of which is his gentle natured patience. That beautiful little smile throughout what must be an incredibly frustrating process.
Ben has never once cried for himself in this whole journey except when there was physical pain.
He still whispers words of love and cares more about his family than he does himself.
Staff from ICU stream through our room each day to see with their own eyes the miracle that is this kid.
On any given bad day you may be having, imagine viewing the world through the lens of love this child has when even relearning to sit, stand and walk is done with a smile ❤️
In the wise words of Ben the Warrior - "peace"
xxx

https://www.facebook.com/116324449074543/videos/11...

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So so proud of you Ben keep at it!!! Found some gorgeous photos of you from last year’s class 1 hike and Daniela’s birthday! We all miss you and saying lots and lots of prayers for you and we ALL cant wait to be able to visit you! Xxxx Daniela, Luciano, Domenico and Parents

Megan Piller

Update posted by Sep 20

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Update posted by Jenni Boyce On Sep 19, 2017

A personal word of thanks this morning from the warrior himself! Sending a message of love, strength and "peace" xxx

https://www.facebook.com/116324449074543/videos/11...

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Update posted by Jenni Boyce On Sep 19, 2017

We took a massive risk asking the doctors to move our little warrior out of icu and place our faith in him to lead his own journey to recovery without unrelenting medicinal interference.
Again, our intuition guided us to trust our child.
On Saturday night - his first out of icu he whispered Mamma. The first word in weeks and completely blowing away medical predications (part of the brain damage impacted his basal ganglia responsible for speech).
Yesterday he was squeezing with his left hand (the side of his body meant to be paralyzed). (Never mind guided fist pumps and voluntary peace signs with his brothers during their visit last night 😂)
Ben was visibly irritated with his nose feeding tube yesterday and eventually last night shouted at the nurse doing the 3am feed to 'stop it' !!!! We both beamed at each other.
Ben then pulled the tube out and I instructed them not to put it back - that I could get him to drink the shake through a straw at the next scheduled time (6am)
Needless to say, he finished the whole thing.
When I asked if he would like to watch rugby or soccer this morning he whispered 'soccer is better' ❤️
Our little warrior is sleeping as I update you all.
From our whole family to each of you - family, friends and angel strangers... your prayers, love and kindness have touched us deeply.
Our warrior has some road to travel until he can take on his brothers in basketball again, but for the first time in over a month - it looks like he will make this happen.

❤️❤️❤️

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Update posted by Jenni Boyce On Sep 19, 2017

After a torturous period of time, I can finally spend a night sleeping next to my little warrior.
All possible medical interventions have been exhausted and now it's up to Ben.
We trust and love him to choose his journey.
I'm here and won't leave his side x x x

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Update posted by Jenni Boyce On Sep 19, 2017

Today I was asked - "Why do you think this is happening?"

The response I gave was:
I feel like as people we have lost touch with what is important. Our focus on short-term material crap is mental. There is always a price to pay for that. Ben has generated and stirred such a massive emotional response - for obvious logical reason - a magical, energetic, kind and empathetic 8 year old who was always otherwise healthy inexplicably being impossibly compromised by illness.
As parents, we are as guilty as anyone else for thinking "we have time"
Why is this happening?
We can't tell you - it's beyond reasoning, understanding or emotional acceptability as parents, but we can say this...
Ben the little legend warrior has generated enough interest through his plight that the message he is sending is clear:
Please, take note of what really matters. Read the bedtime story. Go kick the ball. Lie for 5 more minutes.
God forbid you ever end up in a situation where all you wished for was to have the chance to do that one more time.

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Update posted by Jenni Boyce On Sep 19, 2017
Ben The Warrior
September 13 at 6:32pm ·

Today we can't update you with progress. There are so many unanswered questions:
- why does he keep getting infections that no one can explain?
- why can't anyone tell us what his life will be like when he comes out the other side of this?
- how does the world keep turning without him singing in the car on the way to school each day?
- why did I spend so much time on my stupid phone worrying about work when I was with him?
- when are we going to hear his sweet little voice again?
- when is he going to ask us to go to Bounce, the Bike Park and Roll-egoli all in the same day again?
- when can we argue about him drinking coke instead of water?
- when will he give us the giant "huggles" he loved so much????

When is he coming back to us and what are we supposed to do to make the right decisions for him right now? Are we doing enough?

And most importantly - does he know how much we love him and how proud we are of him?

We miss you beautiful soul xxx

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Update posted by Jenni Boyce On Sep 12, 2017

From what we are starting to gather, there are no rules when it comes to this evil infection.
Despite five full cycles of plasma transfusions, there was an increase in the infection count today and our little warrior, whilst fighting bravely and trying his very best, was just not quite himself - which is absolutely ok - he has all the love, support and patience from all of us to stay right by his side until he gathers the strength to give this virus another serious beating. Which we know he will.
One day, one visit at a time - we all holding on tight - as long as Ben the little warrior is fighting, so are all of us.
If your kid has a messy bedroom tonight- let it go and rather just tell them one extra time how much you love and are proud of them xxxxxxxxx

Please continue to keep Ben and his family in your thoughts and prayers.

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Did they ever identify the actual infection? Poor little guy - at least you have now been able to explain things to him. Sending lots and lots of love, Mimi

Michèle Nelson-Bolton

Update posted by Sep 12

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Update posted by Jenni Boyce On Sep 11, 2017

Dear Team Ben x

Our visit with Ben this morning was so uplifting! Our little hero is breaking all the rules with the rate of his progress.
He gives us giant crooked smiles when we joke with him 😀
His Physio told us that he also had a big cry today during some of the less pleasant exercises - which although seems heartbreaking, is actually great news in terms of his registering pain and discomfort.
Today will be day for of his Plasma Transfusion - which means we are at the half way mark with that.
Our legendary neurologist is still fighting with Discovery to cover the enormous costs of these procedures - we will keep you updated on how that goes.
The Paypal issues have been resolved from our side and it should be back up and running today. Please do get in touch if you have any hassles.
The main thing remains the daily progress our little warrior is making - we are certain this comes from all your love x x x
Sending love to you and all your families xxxxx

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Such great news to hear of his excellent progress - that’s why he’s a warrior. Lots of love and hugs, Auntie Mimi xxx

Michèle Nelson-Bolton

Update posted by Sep 11

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We are all behind you Warrior Ben - your friends can’t wait to see you healthy and well. Love Izebelah (Class 2B Michael Mount)

Janine Slome

Update posted by Sep 11

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Get well soon, Ben! We miss playing with you. We had so much fun while we were in South Africa and will have more of these moments. Love from far away Timor-Leste

Lavan, Raoni and Family

Backed with $100.00 On Sep 22, 2017

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pascal wedam

Backed with $10.00 On Sep 21, 2017

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Olivia & James / Vanessa have followed Ben's story and met you in the coffee shop at the hospital while visiting my very brave friend Karen Bray. Sooo pleased to see The Lord has given them both second chances. I cannot wait for the two of them to take on this challenge called life here on earth. He is a GOOD GOOD Father and I continue to pray for you all. LOVE always wins

Jenny Hibbert

Backed On Sep 21, 2017 Amount Hidden

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It warms our hearts so much to see the courage of Ben. Lots of strength to his parents too, through this journey.

Emely Van Heesch-Smith

Backed On Sep 21, 2017 Amount Hidden

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Good luck in your recovery process Ben! We're thinking of you and your family.

Daniel Smith

Backed On Sep 21, 2017 Amount Hidden

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Anonymous

Backed On Sep 19, 2017 Amount Hidden

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Anonymous

Backed with $100.00 On Sep 19, 2017

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Wishing Ben a speedy recovery! With love from Miles and Natalie Lappeman

Natalie Lappeman

Backed with $250.00 On Sep 19, 2017

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all the very best to you all x

anne ferris

Backed with $10.00 On Sep 18, 2017

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Anonymous

Backed with $100.00 On Sep 18, 2017

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