Zakky started playgroup in September 2015 at the age of two and was full of energy! He loved running around, playing football and mixing with the other children. There were certainly no worries about his health at the time.
But not long after he was diagnosed with high-risk neuroblastoma, a day before his 3rd birthday. He fell ill quickly and had to go through a lot of treatment for such a little boy.
His frontline treatment came to an end in December 2016, after which there were no more treatment options available to him in the UK. A daunting prospect for his family with the knowledge of the high rates of relapse that come with such poor prognosis.
They identified the DFMO clinical trial in Michigan as an opportunity to continue his cancer therapy and try to keep his cancer away. It needed a fundraising appeal through Solving Kids’ Cancer to raise the £134,000 for Zakky to be able to access treatment.
With thanks to so many kind-hearted people, the target was met and Zakky began treatment on 2nd January 2017, having six rounds of treatment at Helen DeVos Children’s Hospital over the next two years.
Zakky’s family are fundraising in case he needs any further treatment in the future that is not available on the NHS and they remain forever grateful for the love shown to their little man: “You will never know how much each and every penny donated means to us. It’s the most heart-warming feeling knowing that everyone is behind our boy. Because of your support, we gave our boy the chance he deserves and have hope that we can keep him cancer free.”
A couple of weeks into playgroup Leeanne and Gareth, Zakky’s parents, noticed that Zakky had become very lethargic. They initially thought this was because of his new early morning routine but his tiredness didn’t improve. “Gareth and I thought Zakky may be anaemic or in need of some supplements. We decided to take him to the family GP.”
During a GP examination, the Doctor felt ‘something’ in Zakky’s abdomen and referred the family immediately to the Royal Victoria Hospital (RVH) in Belfast. “The GP assured us this could be nothing but was leaving nothing to chance,” says Leanne.
At the hospital, Zakky had blood taken for tests and an examination. Leeanne recalls how “it felt like forever waiting for those results. We were given a private room and at that point our gut feeling told us that there was more to it than a simple virus or low blood.” But the blood tests came back clear and his blood counts were within the normal range to the relief of the family. The relief, however, was quickly replaced by worry when they were told that Zakky had to stay in overnight because he needed an ultrasound in the morning as his liver felt ‘enlarged’.
An already long day turned into a long night for Zakky’s family. Morning arrived and Leeanne and Gareth waited anxiously for Zakky to be taken for his ultrasound. Zakky’s parents stayed with him and watched the Doctor’s expression as the ultrasound took place. “We knew there was something wrong when the Doctor was examining the images on the screen,” says Leeanne “but we had to wait again for another doctor to see us before being told anything.”
This is when Zakky’s parents heard the dreaded news – Zakky had a mass in his abdomen above the right adrenal gland. “We knew it was cancer” says Leeanne “although nobody would say it until a biopsy had been done.”
“Our world felt like it was crumbling around us. We felt totally out of control of the situation,” explains Gareth.
From this point everything happened quickly. Zakky was admitted to hospital and taken to a ward where he could have his own room. There were more scans, tests and bloods taken. He had surgery to insert a Hickman line – a central line where medicines could be administered. As Zakky recovered from the surgical procedures and the family waited for the results, Leeanne and Gareth recall how the days felt like years.
Finally, one day before Zakky’s 3rd birthday, the medical team were able to make a diagnosis.
“Our baby boy had stage 4 high–risk neuroblastoma. There was also metastatic disease which meant it had spread – there was disease in his bone marrow,” says Gareth and Leeanne.
Neuroblastoma is a particularly aggressive form of childhood cancer and the most common cancer outside the brain in children under five years old. In most cases it is only diagnosed when it has already progressed to a late ‘high–risk’ stage.
“We had suspected that we’d be told that Zakky had cancer, but hearing it broke us emotionally and mentally. We immediately felt angry… why our boy??” say Zakky’s parents. With Zakky’s 3rd birthday the next day, Leeanne and Gareth decided to focus on this, although it was incredibly difficult. “We were determined to let him have as much enjoyment as possible!” says Leeanne, before going back in to hospital for treatment.
Zakky fell ill quickly after being diagnosed with neuroblastoma and had to start treatment as a matter of urgency. His treatment included multiple infusions of different chemotherapy drugs, stem cell rescue, surgery, radiotherapy and immunotherapy. As well as this, he’s had multiple injections, blood tests, general anaesthetics, bone marrow aspirates and scans.
Flying to Michigan
Zakky and his family travelled to the Helen De Vos Children’s Hospital in Michigan in January 2017 for the first round of the DFMO clinical trial.
As this was a two-year trial, Zakky and his family made numerous visits to Michigan during that time and in January 2019, Zakky completed this treatment. Scans confirmed that Zakky continues to show no evidence of disease.
It is hoped that the follow up required can be done in the UK and that the family won’t need to travel back to Michigan.
Leeanne and Gareth say, “We are the proudest parents and in total awe of our wee sunshine! We can never thank you all enough for your continued support and helping us get to where we are today.”
Zakky’s fundraising campaign
High-risk neuroblastoma has a high rate of the cancer returning, and if this happens just 1 in 10 children survive. While Zakky has taken part in the DFMO clinical trial, this is not a complete guarantee that his cancer will stay away for good.
Zakky’s family are fundraising in case he needs any further treatment in the future, that isn’t available through the NHS.
How you can help Zakky
There are many ways you can help Zakky! You can make a personal donation; hold a fundraiser; get sponsored to take on a challenge; or simply follow and share Zakky’s appeal through his Facebook page.
To donate by text, send “ZAKKY” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.
If you’d like any help supporting Zakky’s campaign, please get in touch on 0207 284 0800 | firstname.lastname@example.org You can also download free Zakky resources (below) to support your fundraising, and access more fundraising resources, including fundraising ideas, templates and guidance.