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Tax Deductibility

The Sydney Children's Hospital Foundation is endorsed as a deductible gift recipient by the Australian Taxation Office. If you wish to have your donation receipted, please send an email detailing the amount donated, date, name and address along with the reference BWILLSD.

About Benny Wills

Benjamin Julian Wills joined the world on Tuesday 18 January 2005 via emergency caesarian. Despite being a month early, he was a beautiful, healthy little boy and until he was about 18 months old, there was no indication that anything was wrong.

Benny reached all his milestones on time, sitting up and crawling at 6 months, standing at 7 months and walking shortly after his first birthday. Benny started talking at just 10 months and by the time he was one, had a pretty extensive vocabulary and was constantly surprising people with how well he spoke.

At 18 months, I noticed Benny had a slight squint in his right eye which I brought to the GP's attention. We also noticed that he was slightly off-balance, particularly when he was tired, and that he had difficulty doing things that other kids his age seemed to find easy such as walking up and down stairs, jumping and climbing. He was also slightly more prone to falling over when walking or running around.

Around this time, Benny was diagnosed with bilateral glue ear to which both our GP and the ENT attributed his balance issues. Benny was also referred to an opthalmologist who prescribed glasses which did nothing to fix the squint. A second trip to the eye clinic and they told us not to worry about the glasses as they weren't doing anything and to bring Benny back in six months time.

Despite having grommets put in, Benny's balance got gradually worse, not better. I remember speaking to the GP and a physio on numerous occasions but no one seemed to be overly concerned or had any suggestions as to why or what we could do about it.

Benny was incredibly bright and engaging and he was almost always smiling and laughing. He loved doing craft, drawing and painting and as he got older, playing card and board games which we did every night before bath and bed. Benny's enduring favourite toys were his Thomas the Tank Engine railways and his Disney Cars - we collected these from all around the world! When Benny was sick, we would sit together and cruise the internet for the cars he didn't have - he so loved getting the parcels in the mail! His little brother Tommy now plays with and loves them just as much.

Benny loved his family and friends more than anything and was very much mum's boy. We did just about everything together. He was over the moon when his baby brother Tommy came and would spend ages lying on the floor singing and talking to him, getting him toys and tickling him to make him laugh. He was happiest pottering about with Dave and I, playing with Tommy or feeding the ducks with his Grandma and Grandpa.

I know I'm biased but Benny was truly our sunshine, rarely cranky, even when he was really unwell and would laught at just about anything from a story to a funny shaped cloud or bubble. Benny used to love lying on the trampoline with me after dark, looking up at the stars and making up stories. Towards the end of his life, we would look up at the stars and talk about heaven, and how children who went to heaven got their very own star.

Shortly before Benny's third birthday Dave was posted to Cyprus for twelve months and we found out Tommy was on the way. Because of the pregnancy, Benny and I stayed in Australia. Benny was SO excited about getting a baby and couldn't wait to meet him. He chose the colour for the nursery wall, a first teddy for Tommy (which he then needed to sleep with until Tommy was born - he didn't want it to be lonely), decided what he was going to play with Tommy and used to love feeling him kick in my tummy.

In the months leading up to Tommy's birth, Benny started to fall over with increasing frequency and started vomiting in the mornings sometimes, just after breakfast. The squint in his eye got much worse and he would fall asleep everytime I took him somewhere in the car and sometimes just on the couch in the middle of a game. We were in and out of the GP's more times than I can count and were told on multiple occasions that Benny had a virus and needed a rest. We went back to the opthalmologist who told me he didn't know what was wrong with Benny's eye. I felt completely helpless and increasingly frustrated that no one seemed to be taking my worries seriously.

Dave was back for a month when Tommy was born and took Benny back to the GP with a request for a referral to our paediatrician as I was really freaking out by this time. We finally got our referral and Benny was booked in to see our paediatrician in October. In the two weeks after Dave went back to Cyprus, things went from bad to worse.

The vomiting became more frequent and so did the falling asleep. He would be in the middle of a playing a game and would just crash on the couch. I picked him up from childcare one afternoon and he had fallen flat on his face and given himself two black eyes. I remember ringing Dave that night, totally freaking out but he told me to calm down, everything would be fine. Then, over the weekend I noticed Benny was having trouble speaking. He sounded kind of slurred and would start saying something, then not be able to get the words out and would just end up babbling. By this point he was sleeping in my bed every night as he would wake up and fall over and crash into the walls trying to find me.

The following week he fell at childcare again and in tears, I rang the paediatrician and left amessage with the receptionist. When he called me back and I told him what was going on, he told to bring Benny in the following morning.

So, on 3 September 2008, began the most torturous and terrible journey a parent can experience. Our paediatrician assessed Benny and ordered an urgent brain MRI. I will never foget him watching Benny attempt to walk into his office and asking why our GP hadn't sent him in to see him earlier. He told me he thought Benny either had a bleed on his brain or a brain tumour.

I rang my mother-in-law straight away and she promised to be at the hospital with me for Benny's scan. I rang Dave to let him know and he got ready to come home pending the results of the scan. I didn't sleep much that night, I just held my baby and prayed that he would be ok.

Benny had his MRI at Canberra Hospital on Friday 5 September 2008. The scan took almost an hour and a half and after being told it would take 30 minutes, I knew something wasn't right and was quietly panicking. When I walked through the door into recovery all the nurses, anaesthetist and technicians were standing around Benny's bed and our paediatrician had been called. I knew at that moment that something was terribly wrong. Our paediatrician showed me the scans and told me they had found a large tumour on his brain stem and that the prognosis wasn't good. He told me not to panic, that we would know the actual details once we had spoken to the specialists in Sydney. Appointments were made while I sat there in shock - I must confess I lost the plot at this point and couldn't stop crying. I was told that we had to take Benny up to Sydney the following day to see the specialists at Sydney Children's Hospital, Randwick and to pack and prepare to be there for three weeks or so. I rang Dave who booked a flight back to Sydney and took my babies home to pack. My in-laws came with me and made sure I ate. I cried all night long.

Dave's parents drove up to Sydney with me the next day and we were installed in the neuro ward at Sydney Children's Hospital. The following day, when Dave got back, we met with Benny's specialists, an oncologist, a radiation oncologist and a neurologist. We were given the diagnosis of Diffuse Pontine Glioma, an inoperable brain stem tumour and prognosis, with treatment of 12 months.

The only treatment that currently has any effect on these tumours is radiotherapy which we were told would shrink the tumour, improve Benny's quality of life and buy us some precious time with our son.

We ended up in Sydney for two months while Benny underwent 25 sessions of radiotherapy, each with a general anaesthetic. Initially he was given steroids to help reduce the swelling in his brain and these gave him an enlarged liver, a heart murmur and the worst constipation I have ever seen. Our poor darling ended up having to be flushed out with bowel prep which is usually only used before a colonoscopy. I used to worry every day when Benny went in for his treatment, that he wouldn't wake up from the anaesthetic.

Benny also had surgery to insert a central (Hickmans) line through which all his medication was administered and blood taken. About mid-way through his treatment Benny got an infection in his central line and almost died. To this day, I am not sure how we got through this time, but I do know that it would have been impossible without the support of our family and the amazing staff at Sydney Children's Hospital, in particular our beautiful social worker.

Everyone was blown away and humbled by Benny's courage throughout this whole journey. Despite everything in his world changing overnight, Benny never complained. Not once. He went through treatment, physio, infection, daily anaesthetics and the side effects of both his tumour and treatment with a smile. As the treatment began to work, he would walk and then run into theatre every morning with a big smile on his face and his teddy Brucie in his arms. All he need was to have us by his side every step of the way. Every day when he woke up from his treatment, he would have an apple juice and a Freddo frog.

I am not sure we ever really totally came to terms with the enormity of the situation we found ourselves in or the fact that our baby was dying. At the same time we were painfully aware of the time we had and we did our best to make sure that what we had was filled with love, laughter and as many happy memories and experiences as we could.

For us, from the moment Benny was diagnosed, the future became very focused on our family and about how we could give both our boys the best we could in the time we had. Benny's dreams were to play soccer, see real snow and go to preschool. He was able to do all these things with some help from Gungahlin United and some amazing friends. He was also granted a Starlight wish which was a trip to the Gold Coast and Australia Zoo. Benny got to meet the Wiggles with his cousin Lily and thanks to our amazing community, was given a beautiful backyard makeover complete with fairy garden and deck. This was Benny's special place.

Benny started to seriously deteriorate in early June when he could no longer safely swallow and had to have a nasogastric (NG) tube put in. We decided to care for Benny at home with the help of ACT Palliative Care, our paediatrician who made house-calls just for Benny, and Therapy ACT. Benny's tumour took away his ability to walk, talk, eat and drink. It affected his heartbeat, body temperature, breathing, swallowing and sight. Despite all this, our incredibly brave little boy smiled until he couldn't smile any more. He never complained about anything that happened to him but bore it all with tremendous stoicism. I always explained to him, in a way that he could understand, what was happening so there was never really too much that was unexpected. It is not an overstatment to stay that he truly is our superhero.

On Friday 11 September 2009, we spent the morning in Benny's fairy garden. I sat with him in the swinging seat and sang all his favourite songs. I told him we love him, always will but then when he was ready, it was ok for him to go. This was without a doubt, the most difficult thing I have ever had to do. I wanted him to know that we would be ok, but at the same time I wanted to hold on to him for dear life and never, ever let him go. No matter how well prepared you think you are, you can never even imagine what it is like to lose your baby until you already have.

A few hours later, when the nurse came to do Benny's medication, he began struggling for breath. Dave and I sat with him in our arms, telling him over and over how much we love him, that we will never forget him and that it was ok for him to go. Our beautiful Benny passed away at lunchtime in our arms.

Nothing has been the same since we lost Benny and nothing will ever be the same again. Although it doesn't feel like it at the beginning, life does go on and eventually you realise that you do still have the ability to function and even to love. Tommy and I talk about Benny often, he thinks his big brother is the coolest and loves to know about the things his brother like to do and say. He blows kisses to Benny in heaven and has decided that all the stars in the sky are Benny's. I wish more than anything that Tommy could have got to know his big brother for real and not just through what we tell him. He will one day know just how incredibly brave, intelligent, loving and full of sunshine our Benny was.

Late in August 2012, we welcomed our third son Samuel. Sam has done something I didn't think was possible and given a little of what I lost when Benny died back to me. He is an incredibly precious gift for both Dave and myself and the best thing ever to happen to his big brother Tommy. I only wish that he could have got to meet his biggest brother Benny, to have a cuddle and to get to know him.

Even if I had known what was coming, I would still do it all again. I am beyond lucky to be Benny's mummy and even though I miss him all the time, my life is so much better for having had him in it. We love you always and forever Benny boy. xoxoxo