Darius Fitzgerald: A Remarkable, Beautiful, Miraculous Life

An Update On Darius Fitzgerald:

Every few months, Darius Fitzgerald undergoes a sedated MRI in order to monitor his many tumours caused by neurofibromatosis type 2 (NF2). One of his most recent scans revealed an aggressive tumour growing on his spine that was also wrapped around his vertebral artery.

His medical team needed to act fast in order to remove as much of this rapidly growing and potentially fatal tumour as possible.

His family was prepared for the worst.

Yet despite the odds stacked against him, Darius underwent the critical surgery, had most of the tumour removed and came out fighting like a champ.

“His healing process has baffled everyone,” says Darius’ mother Danielle Fitzgerald. “We can only attribute it to his amazing NF2 team as well as everyone’s love and support. Darius feels it – he soaks it all in and it radiates through his smile.”

Soon Darius will begin a regimen of chemotherapy treatments every two weeks for a year. Before this begins, he will undergo another sedated MRI in order to monitor his other tumours. His family is praying that there will be no change so that his energy can be focused on healing from the surgery before beginning the chemotherapy treatments.

Until a cure for NF2 is identified, Darius is paving the way for future paediatric NF2 patients – and in typical Darius fashion is doing so with his signature strength and positivity.

The post below was originally published in January of 2018. If you have not yet read it, please read this amazing story about an amazing little boy. And share it. It is hoped that by raising awareness of NF2, a cure can be discovered. To all my loyal readers who first read this post back in January of last year: please share and thank you for your continued support. If you would like to help the Fitzgerald family I have included two links at the bottom of this post to do so. Thank you.*

Two-year-old Darius Fitzgerald is a bundle of energy and happiest when giving cuddles. According to his parents, Danielle and Andre – he is one-of-a-kind. The thing is – to the rest of the world, Darius is an honest-to-goodness one-of-a-kind. He is a medical marvel and in all likelihood, there is truly no one else on earth like him.

This happy and loving tot has endured more in his short life than most will deal with in a 100-year lifetime. His life’s journey has consisted of twists and turns from the very beginning. More than once, little Darius has teetered on the brink of death – and come back all the stronger because of it. And despite it all, he falls asleep each evening and wakes up each morning with a smile on his face.

This is the story of Darius William Fitzgerald.

In early 2015, his parents Danielle and Andre Fitzgerald were over the moon to discover they were expecting. Already proud parents to their eldest son Silas (now seven), they had tried for another baby for several years and had even sought the help of a fertility specialist. Then, just as they began looking into the adoption process, Danielle discovered she was pregnant.

“We chose not to undergo any testing – even though I was 42 at the time and knew there were risks due to my age,” says Danielle. “Darius’ ultrasound was perfectly normal and my pregnancy was smooth sailing for the most part (aside from suffering from gestational diabetes and being considered a geriatric mother). Plus, both Andre and I knew that a test wasn’t going to change the fact that we were thrilled to welcome another child into our life – and we would love this child no matter what.”

At the 38-week mark, Danielle was scheduled for a C-section and on October 1st, 2015, Darius was born. Almost immediately, the doctor suspected that Darius had Down syndrome for several reasons: he was extremely calm, he had crimps on the edges of his ears, he had something known as a Simian Crease across his palms and he had a space between his toes – all markers suggestive of Down syndrome. Blood was drawn from Darius and sent away for karyotype testing.

******************************************************************************************************How has Darius changed Danielle’s life these past two years? Keep reading to find out . . . ******************************************************************************************************

“I was feeling so many conflicting emotions at the time – happiness at having this perfect little baby that was so loved and wanted; fear for the future and what it would hold for Darius; worry that I couldn’t be the mother that Darius deserved,” says Danielle. “Luckily, both Andre and I have a strong support network. And despite having so much to wrap our heads around, we had each other too. As each day passed, I started crying and worrying less and less.”

Once at home, Danielle got to work researching Down syndrome and contacting various groups and organizations in preparation of a positive diagnosis. As time continued to pass, Danielle, Andre and Silas fell more in love with their newest family member. By the time the test came back – two weeks later – confirming that Darius did have an extra chromosome and as a result Down syndrome – there was only one direction for the Fitzgerald family to go and that was forward.

“After getting that confirmation – I actually left the doctor’s office relieved and happy,” says Danielle. “I knew what we were dealing with and I was no longer scared. Our life was back on track – and I was just excited to get back to living a normal life with my two sons.”

*******************************************************************************************************”I am a much more compassionate person now – especially where children are concerned.”
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An upcoming doctor’s appointment soon revealed cause for more concern. An echocardiogram (heart) test that Darius had undergone soon after his birth showed two holes in his heart. The good news was the cardiologist consulted on the case felt they would most likely close on their own.

On December 23rd, 2015, things took a scary turn. Darius was getting over a cold but seemed to be improving. Yet at dinner, Danielle and Andre took notice that he seemed uncomfortable and was uninterested in eating – and his breathing appeared laboured.

Trusting their parental instincts, Danielle took Darius straight to the ER. Upon their arrival, Darius was whisked away and a medical team tore off his clothing, calmly yet urgently hooked him up to several machines and began working on him. Then Danielle heard the words that no parent ever wants to hear concerning their child:

“We’re losing him.”

“I called my husband and told him to get to the hospital. I didn’t have to give him any details – he knew by the tone of my voice how serious the situation was,” says Danielle.

By the time Andre arrived, Darius had been stabilized. But he wasn’t out of the woods yet. They were told he was suffering from an extreme case of pneumonia and that both of Darius’ lungs had collapsed. He would need to be airlifted to London – as the Thunder Bay hospital had no paediatric surgeons on staff that could insert the catheter he needed to give him a fighting chance.

*******************************************************************************************************“I have realized – that not only am I a good listener – I’m also a fighter.”
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A terrible ice storm meant that Darius would have to remain in the Thunder Bay intensive care unit until the weather improved. Danielle remained at his side. And she would continue to do so throughout the emergency flight – without her purse or even a diaper bag at her disposal – just her overwhelming maternal love and fear enveloping both her and her baby boy.

Once in the London Paediatric Critical Care Unit (PCCU), the doctor explained that Darius would need to remain for several days until the pneumonia cleared. And then the following music to Danielle’s ears: Darius would be okay.

Danielle spent Christmas day by Darius’ side, face-timing with Silas who was back in Thunder Bay opening up his presents. Her emotional roller coaster ride was far from over. The London cardiologist informed her that the pneumonia had left Darius’ heart in an extremely weakened state – as soon as Darius gained some weight he would have to undergo open heart surgery. Compounding this worry was the fact that doctors noticed something unusual in one of Darius’ eyes – but this issue would have to be put on the back burner for now. Medically speaking, Darius had bigger fish to fry.

“Everyday was an emotional whirlwind as Darius would have a good day followed by a bad day,” says Danielle. “He developed infections and ended up receiving many blood transfusions. And because he was in an incubator, I was unable to hear his cries. But seeing his smiles gave me strength.

“Thankfully, I had a steady stream of supportive friends and family come to met Darius and visit with me. It gave me the much needed opportunity to escape the medical jargon and beeping machines and actually feel normal. And my best friend back home organized a GoFundMe account that allowed Andre and Silas to fly down to spend a week with us as well. Things seemed to be on an upswing.”

*******************************************************************************************************“I savour my children – I watch them while they sleep. Sometimes I take comfort in placing my ear to their chest – just to hear their heart beat.”
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Darius had a scope performed on his colon due to the detection of blood in his stool. Then just like that, the pendulum shifted. A day later it was discovered that the scope had punctured Darius in several places and he had become septic. Danielle panicked as she stood by watching helplessly as her son’s skin turned grey and his belly swelled with infection. Darius required immediate surgery in order to save his life yet ironically, doctors were uncertain that his damaged heart could survive the operation.

Meanwhile, Andre and Silas were at the airport ready to fly back to Thunder Bay. Darius’ doctors advised them to cancel their flight and return to London in order to say their goodbyes.

“I just couldn’t stop thinking: Why Darius? Why our family? It’s not fair. Why couldn’t it be me instead of my boy?” says Danielle. “Those four hours of surgery were the longest in my life. We sat in a tear-clouded silence in the waiting room – me, Andre, Silas, my parents – prepared for the absolute worst.”

When the doctor entered the waiting room, no words were needed. There was joy in her face. Darius had beaten the odds and pulled through and done better than anyone had dared to hope. A slight hiccup during the surgery resulted in an unplanned ileoscopy which meant Darius would have to poop out of a side bag for the next few months. But this did little to dampen the overwhelming relief and happiness that everyone within Darius’ orbit felt.

*******************************************************************************************************“When Darius meets milestones – it is a celebration worthy of a Facebook status update.”
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Darius spent another month in the PCCU recovering. At the 38-day mark, he was airlifted home to Thunder Bay where once again he and his family could focus on living life – while waiting for Darius to gain wait for his next round of surgeries.

Over the course of the next three months, Darius thrived as did the rest of the Fitzgerald clan. Then he was on his way back to Toronto for open heart surgery in order to close the holes. Midway through the six-hour surgery, it was also discovered that one of his heart valves required repair. Darius handled the major surgery like a walk in the park. A week later he was home in Thunder Bay healing once more and awaiting his next and hopefully final surgery – the reversal of the ileoscopy done earlier.

Performed in London, the reversal was a success and in true Darius fashion, Danielle was cuddling with her happy baby boy mere hours after the surgery. Over the next week, Darius recovered and his father and brother joined him and his mother in the hospital. The plan was that following his discharge, the foursome would indulge in a much-needed and anticipated mini-vacation to visit some nearby family. But first – one more visit with the London ophthalmologist.

The pendulum swung once again.

The ophthalmologist told Danielle and Andre that Darius had a tumour in his eye. He was immediately rushed to Toronto for further testing.

“And just like that, my strength seemed to drain away,” says Danielle. “I was ready to give up and surrender. I was nothing but a lost and empty shell.”

The medical staff at the Toronto eye clinic were baffled. While Darius did indeed have tumours in his eyes, they were unlike anything they had ever seen before. Over the next couple of days, he underwent an invasive and uncomfortable battery of tests. The findings resulted in some good news and bad news.

The good news was that the tumours were determined to be non-cancerous. The bad news: Darius was declared legally blind.

The cause of the tumours was still an unsolved puzzle to Darius’ medical team. More testing was required and Danielle and Andre were thoroughly interviewed by a genetics team in the hope of getting to the bottom of this mystery.

*******************************************************************************************************“I want to shower every nurse, doctor and surgeon with gifts of gratitude.”
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Four months later, the results came back. Darius was suffering from a rare genetic disorder known as neurofibromatosis type 2 (NF2) which affects approximately 1 in 25,000 people worldwide. Individuals suffering from NF2 typically develop a series of benign tumours on nerves carrying sound and balance information to the brain. Oftentimes, NF2 results in partial or complete hearing loss, vision impairment and balance issues. While most individuals with NF2 develop symptoms either in their late teens or early adult years, only 10% will be diagnosed during late childhood. Once again, Darius had defied the odds by becoming symptomatic at such a tender age.

According to Darius’ medical team, he is a possible 1 out of 7.5 billion individuals who has both Down syndrome and NF2. In fact, experts know of no other cases and in all likelihood, Darius is the only person worldwide who can lay claim to this particular distinction.

As a result, Darius will more than likely have to undergo numerous surgeries throughout his life – including brain surgery and even radiation treatment in order to keep the tumours to a manageable size.

Every few months, Darius and his family make the trek to Toronto from Thunder Bay in order to have the tumours monitored. And each visit means the Fitzgerald family is praying they have not grown, changed shape or multiplied.

*******************************************************************************************************“I truly love and embrace every single moment of this journey I am on.” – Danielle Fitzgerald
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Doctors have advised the Fitzgeralds to continue living life as normally as possible – making every day count – as there is just no telling what tomorrow will hold for Darius. For anyone really. And so this is what the Fitzgerald family does. They are prepared to walk to the ends of the earth for their little, one-of-a-kind medical miracle. And they do. And they always will.

What isn’t always evident in life is that there is strength in happiness. It’s a simple yet effective way to rise above and beyond what we have no control over. Once we have taken stock of the situation at hand, it’s happiness that will propel us forward. Two-year-old Darius Fitzgerald has already figured this out. His inner strength is reflexive, derived directly from his innate and unconditional happiness – joy he garners from his family, his friends, himself – and from his remarkable, beautiful, miraculous life.

*If you would like to donate money toward NF research, please do so at Neurofibromatosis Ontario. If you would like to donate money toward Darius’ medical needs, you can do so by sending an e-transfer to: daniellesaint@msn.com or directly to the Royal Bank under the name Fitzgerald with account number 016020035047154.