If you could have one wish, what would it be?
When Starlight Children’s Foundation asked the Royal Australian Navy to help grant the wish of a young boy, the response was enthusiastic. Consequently, 12 year old Jake and his family visited HMAS Cerberus and NUSHIP Canberra on August 7 and 8 for an up close look at what Navy does.
Jake knows more about being brave than most adults. Three and half years ago he was diagnosed with a liver condition called Focal Nodular Hyperplasia (FNH), which causes abnormal liver function. Two months ago it was discovered that Jake doesn’t have a portal vein leading into his liver and that his body has instead made a shunt to carry blood toward his heart and lungs. This has caused high pressure in his lungs and causes his heart to work harder and become enlarged, resulting in a condition called Pulmonary Hypertension (PH).
Time is critical as Jake’s condition affects other organs and needs to be stabilised enough before a transplant. His Mum, Sam, explains that a recent procedure to force blood flow in another direction failed and had to be removed in a hurry. A new method will be tried when Jake’s PH can be stabilised.
“This hasn’t been done here before so the Royal Children’s Hospital is taking advice from French doctors. We are literally waiting for ‘the call’,” Sam said.
“We’re not sure what to expect, but after years of waiting for answers, we can only be hopeful and positive that this may be the break our little man needs.”
Like any young boy, Jake still dreams of what he wants to do when he grows up, his two choices; the Navy or being a fire fighter. The Navy aimed to give Jake and his family a taste of both.
Commanding Officer HMAS Cerberus, Captain Stephen Bowater welcomed Jake, presenting him his own special Ship ball cap and telling him that he could be the boss while he visited. The fun included a spin around the inlet in a Rigid Hull Inflatable Boat, putting out compartment fires and plugging a leak in the damage control simulator, and driving in a Fire Truck with lights and sirens to answer a ‘fire emergency’, where Jake directed fire fighters to retrieve a casualty from a smoke filled room.
“Jake is an amazing young man. The challenges that he and his family face are a lesson to all of us on how to face adversity, to have courage, to value what we have,” Captain Bowater said.
“As a parent and grandfather, I’m grateful for my family, and as Commanding Officer of Cerberus, I’m honoured our Navy could do something special for Jake’s family.”
Jake has endured four liver biopsies, countless bloods tests, MRI’s, Cat scans, a PET scan, radioactive scans and catheter procedures through his neck and groin. With unconditional support from his family, friends and hometown, he meets every challenge with quiet fortitude, determined to experience a normal boyhood while being a big brother to little sisters, Ella and Kayla.
Jake’s parents admit that it’s hard, but Jake’s attitude helps them through. Sharing the wish visit with the help of Starlight has given Jake and his family a treasured experience to remember together.
“Jake never complains about any of his procedures. If anything hurts he barely makes a noise. He is one tough cookie and this is definitely where our strength comes from. If he is coping and never complains, then what else can we do but the same?” Sam said.
Starlight brightens the lives of seriously ill children and their families, by replacing pain, fear and stress with fun, joy and laughter.
Since its establishment in 1988, Starlight has granted more than 8,000 Starlight Wishes for seriously ill children and teenagers across Australia.
“The experience of a once-in-a-lifetime Starlight Wish not only lifts the spirits of the child; it brings the entire family together. We’re grateful for the support of the Royal Australian Navy in helping Jake’s Starlight Wish come true, and giving him and his family something positive to look forward to between treatment,” Starlight Chief Executive Louise Baxter said.
Starlight Wish recipients have experienced increased wellbeing and happiness, and parents have felt more hopeful about their future following their child’s wish.