Will's Story

By Tim Lipscombe

This story is a glimpse into the journey of our amazing and inspirational son, Will, and his brave battle through two rare illnesses. It is a story of pain and tragedy, that brought with it a never-ending bond of love and hope . . .

• Language: English
• Publisher: Bobby Graham Publishers
• Release date: May 14, 2021
• ISBN: 9780645140224

Book preview

PROLOGUE

I just wanna go home! Will pleaded exhaustedly to the nurse once again, tired from the pain he had been enduring on and off for several days now. I’ll see what I can do, buddy, the nurse acknowledged sympathetically. She knew only too well of his suffering. At only eight years old, Will was not afraid to speak up for himself. It was something he had developed over the numerous hospital stays he had already racked up in his short life. After all, it was necessary to speak up for yourself when there was so much other bad stuff you didn’t have a say in—the procedures, the pain, all the scary stuff.

However, despite the many hospital visits William had had over the course of his young life, this time was different. The waves of pain in his stomach that he had started to experience days before had not subsided, in fact if anything, they seemed to be getting steadily worse. Despite the painkillers he was given, he just couldn’t get comfortable, and the specialist was still uncertain what was causing it. For Rachel and me, we had seen our son go through a lot and it was always difficult. But this was something new and we were scared.

It was Easter Sunday, 2013 and Rachel, Ruby, Joseph and I had been at William’s bedside in hospital. My parents had invited us to Easter lunch and despite my apprehension, it appeared that Will would be allowed to go home, so I decided to take Ruby and Joseph, who were ten and five at the time, just for a short visit. Rachel stayed with Will as she always did, his mum was always the constant for him in hospital. I left feeling uneasy.

We arrived at my parent’s place, and my sister and her family were there as well. The mood was subdued. They knew that things were not good and asked me how William was. I told them I wasn’t sure what it was that was making him so sick, but my intuition told me something was seriously wrong.

I was very emotional and as I began explaining to them what had been happening, I noticed a picture hanging up in the dining room where everyone was sitting. The picture was a still life of flowers in a vase, drawn with black and white charcoal on rough pastel green paper, the work of a skilled hand. Will had drawn it in the art class he went to the year before. I broke down…

PART I

THE EARLY YEARS

When William was born, we were over the moon. We had again been blessed to experience the joy of a beautiful new baby, as we had been with Ruby two years earlier. Ruby, of course, was smitten with her new little brother as well.

As a newborn, he was quite small and had little features and big beautiful blue eyes. He was a little unsettled early on, he would often get quite upset and did not sleep very well at times. He always wanted to be close to his mum and liked being held in a baby carry pouch or lying in our bed, snuggled in next to us.

A beautifully natured child, as a toddler, William had grown to be a happy and energetic little boy. He was cute, with a cheeky little smile. He started to walk before he turned one and talking whilst he was still very little. Even from an early age, it was apparent that he was a sociable child. He was also observant, taking everything in and always asking a lot of questions. Will seemed to be a wise soul.

He enjoyed being outside, playing imaginary games, jumping on the trampoline and just having fun. He particularly enjoyed when Rachel would take him and Ruby to the park, often to Adventure Playground, a spacious park with plenty of fun play equipment for children that was located close to our house.

William at six months old

He also enjoyed watching Thomas the Tank Engine and The Wiggles and would sing along to their songs. Toy Story and Cars were among his favourite movies to watch. His favourite characters were Buzz Light Year and Lightning McQueen.

Like all children, he loved birthdays and Christmases. However, from an early age, it was clear that he would get even more excited on these occasions than anyone else in our household; his enthusiasm was infectious. He would be bursting with anticipation in the weeks leading up, making a list of things he wanted well in advance and telling us how many sleeps until the big day.

The look of awe on his face when opening his presents was something to behold. He would stand with his eyes and mouth wide open just staring for some time, before telling us excitedly how much he had wanted and loved what he had been given, whether it was a talking Woody from Toy Story or Mack, the truck from Cars.

Not long before William turned three years old, Rachel was pregnant with our third child. It was a wonderful time for our family. Ruby, who was four at the time, and William were thrilled about this and we fed off their excitement. We talked about whether it would be a boy or a girl and what names we would choose.

Around this time, William—who had always been such a healthy child—had become quite unwell. This lingered for a few days and he was very lethargic and just not himself. Thinking it was just a common cold or flu, Rachel took him to our GP. It was diagnosed as strep throat and we were told it would go away after a few days. We took Will home, hoping that he would recover shortly thereafter, and thought nothing of it.

The illness hung around longer than expected though, and William had also begun to develop puffiness around his eyes, face and tummy, which seemed unusual. Although we were initially concerned, we didn’t look too deeply into it.

After a few days, however, these symptoms did not go away and if anything, the puffiness and lethargy had grown slightly worse. Will was usually so active and would bounce back quickly on the rare occasions he became unwell. We had never seen him like this before. Rachel and I decided things were definitely not right and agreed to take him back to the GP the following day.

That night, I had a particularly unsettling and vivid dream about William with the puffiness on his face and body; it had the strange feeling of a premonition. Upon waking, I felt that lingering dread you can often have after an unpleasant dream, but the dream I’d had was really happening.

We had now started to become quite concerned as we witnessed his health become steadily worse. Along with the puffiness around his eyes, the swelling had now spread to his arms and legs, he had fevers and was generally listless.

Rachel took William back to the GP, who was immediately concerned and advised us that William would need to be admitted into the Canberra Hospital. Things were now moving quickly, and we were becoming anxious.

When we arrived at the hospital, William was taken up to the children’s ward. They were also unsure what was causing the peculiar symptoms he had. Rachel and I were now worried and desperate to find out what was wrong with our son.

I spent the night in hospital with Will. I was in disbelief at where we found ourselves. Being in the ward was a surreal experience; we could hear the screams of one of the children from another room, who was obviously in pain. How could this be happening to us?

Will was now extremely unwell and having bouts of diarrhea. He was also very weak and did not have the strength to get himself out of bed. I carried him to the bathroom and held him up as he sat slumped on the toilet. I felt distressed seeing him so sick. At this point I couldn’t contemplate what the underlying cause could be.

This was to be the beginning of a journey that would have many ups and downs for our family in the years to come.

I took time off from my IT job to stay with William in the hospital. A few days after William had been admitted, his condition had not improved, and Rachel and I were still not clear what was going on. Eventually, the resident doctor told us that it had been arranged for Rachel and me to meet with a paediatric kidney specialist. We were informed that she was the leading kidney specialist at Sydney Children’s Hospital. Uncertain about what this meant, we both felt a sense of dread.

The kidney specialist was frank with Rachel and me, yet she showed empathy as she gave us the serious news. She explained that William had Nephrotic Syndrome, a rare kidney disease usually found in young children.

Nephrotic Syndrome is where the kidneys’ filtering system is attacked by the body’s immune system. Because the kidney’s filters are not working effectively, a protein called albumin leaks into the urine instead of getting filtered by the kidneys and redistributed into the bloodstream, as it should be.

Albumin protein helps the body get rid of extra fluid: it acts like a sponge, drawing extra fluid from the body which then becomes urine. In Nephrotic Syndrome sufferers, because there isn’t any albumin protein in the blood, fluid is retained in the body, causing puffiness (also known as edema). The condition grows steadily worse as the body is unable to release fluid.

To counter this, medication is required to stop the immune system attacking the kidneys’ filters. When the kidneys are functioning properly again, fluid can be released from the body as normal.

She went on to explain the seriousness of the condition, stating that because it was so rare, there was not a lot known about it and it had proven difficult to treat.

This was a critical juncture in my understanding of how the health system works. As Rachel and I were to discover, a great deal of public and private funding for research is given to more common illnesses within the health system. Rare illnesses, such as Nephrotic Syndrome, receive a lot less funding, relying mostly on private donors and charity, even though financial support is desperately needed.

The lack of funding is something the public should be aware of, but unfortunately people don’t realise the importance until—as in our case—they are directly affected by it.

The kidney specialist continued, telling us that there were varying levels of severity for individual sufferers of the condition. These ranged from experiencing just one episode, to having relapses once every few years, to occasional relapses maybe a few times a year. Some patients experienced frequent relapses.

Patients experiencing more frequent relapses would be more likely to carry the disease into adulthood and, in the most severe cases, Nephrotic Syndrome could lead to kidney failure. This could be caused by long-term damage to the kidneys and/or extended exposure to the highly potent drugs required to keep the illness at bay.

She told us plainly that it appeared William was afflicted with a more acute instance of the disease. This would likely mean long-term medical treatment and frequent hospital visits.

Upon hearing this, time stopped. I was overwhelmed. My mind was racing as I contemplated the words the specialist had just used. A rare kidney disease… difficult to treat… relapses… kidney failure.

I was waiting for the silver lining, that everything would be OK, but it didn’t happen.

What we were being told by the kidney specialist after that point was difficult for me to absorb, like background noise. Nevertheless, I tried to force myself back into the present to listen to what I knew was important information we were being given. She was saying something about, Due to there being so little known about the illness, there is also no known cure. My heart sank.

Eventually, I regained my composure and focussed on her explanation. The hope is that the patient will grow out of the condition before puberty, at around ten years of age. This was a little more hopeful. A daily drug regime is necessary as treatment to keep it at bay until then. We can deal with that.

She then described the medication William would be placed on, telling us that we would need to administer the drug prednisolone–a type of steroid–to William twice daily. The dosage would be quite high initially, then gradually reduced over a period of months, until it was apparent that the Nephrotic Syndrome symptoms were under control. She then told us there were significant side effects of the drug, including redness and puffiness in Will’s face and weight gain, as well as a strong probability that such a high dosage would cause noticeable mood swings.

In addition to this, the longer William stayed on this medication the more susceptible he would be to getting longer-term side effects such as stunting of his growth, brittle bones and not being able to have children.

Rachel and I left the meeting shocked and frightened at the prospect that lay ahead for us and, more specifically, for our beautiful little boy Will.

During this first stay in hospital, William’s condition had worsened to the point that he had become extremely sick. He was languid and pale and throwing up frequently. It was so difficult to see my little boy like this; he was usually so happy and energetic.

Adding to this, being only small and slightly built, the puffiness completely changed the appearance of his face and body. This fluid retention also caused him a lot of discomfort, restricting his movement and making him feel generally horrible.

This continued for another week or so and although he began to slowly improve with the steroid medication, he was still quite weak from the experience. After a while, I was able to wheel him around the ward in a wheelchair.

We had only been in the children’s ward a relatively short time, but there was one little boy who we discovered had been a patient there long-term. He was also very sick, but although he could not speak or walk, he had a beautiful, happy and very sociable nature and was a favourite amongst the nursing staff.

As I wheeled William around the ward, the little boy dragged himself over to William and gently put his hand on Will’s, looking up at him with genuine care in his eyes as if to say, I can relate to you buddy, and I’m sorry you’re going through it.

Being very emotional at the time and still coming to terms with the reality of William’s illness, this gesture had a profound impact on me. I felt that this simple act of compassion I had witnessed was transcendent. There were no words spoken, yet there seemed to be an acknowledgement between the two of them that said more than words could.

Gradually, over the coming weeks, the steroid medication William was being given brought the symptoms of his Nephrotic Syndrome under control. He had begun to lose a lot of the puffiness; he was becoming mobile again and was starting to get back into good spirits. After being stuck in his hospital bed for a number of weeks, though, he had become a bit bored. Sympathising, the nursing staff gave me permission to take Will for a walk out of the ward. I took this to mean a chance to take Will outside and

Reviews for Will's Story

[Michelle Dewinter · Rating: 5 out of 5 stars]

Fills me with gratitude and hope . Fly high Will x