Our story of Ben – our warrior xxx

Journey Update | 2 October 2017

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 18^th 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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8 years ago we were lucky enough to welcome into this life, an energetic, expectant little boy who wriggled his way into the hearts of so many people.

Ben has always had this incredible ability to demonstrate compassion and empathy.

As a single mom, this little man became my friend - we planned our weekends around riding bikes, roller blading, and any adventure you could possibly dream of.

Ben also has two gorgeous brothers, Luke & Liam who he idolises, as well as an amazing dad and stepmom, James & Vanessa.

One day, he gets a headache – which turns into fevers and results in an admission to hospital. For the last 2 weeks, Ben has been fighting for his life against Viral Meningitis and two unknown secondary infections which have caused massive swelling on his brain. Ben had his second stent inserted into his brain and whilst we couldn’t be more grateful for the incremental improvements – we realise we still have a very long road ahead.

What we have come to realise is that given the number of specialist doctors in his team, the co-payment gap is becoming too great for us to manage on our own.

We are seeking charitable assistance from anyone who can and will make a kind and generous contribution to these on-going medical expenses. Particularly once he is out of ICU (hopefully within the next 3 weeks) – and then the longer term dependence Ben will have on outpatient rehabilitation.

Our intention is to ensure that the spend on medical bills is extremely transparent and furthermore our commitment that should there be an excess of funding available when our little champ is back to his feisty, energetic self, we would like to give the funds to another child who is battling this evil, debilitating illness.

Please join us on our journey to see this special soul realise his full magic in this world.

Funds are being collected via PayPal, therefore we ask that you enter the amount in US Dollars you wish to donate. Follow the instructions on your bank site to confirm the exchange rate, and your currency amount will be deducted from your bank account.

With thanks and endless love

Ben’s family xxxx