Leaving a legacy to Telethon will ensure your gift lives way beyond you.
Baby Sinead Engelbrecht was just 11 weeks old when her parents, Hayley and David, were told their baby would need a miracle to survive.
Sinead had been diagnosed with a fast-growing, aggressive brain tumour which was taking up three-quarters of the space inside her head. Doctors gave her a less than one per cent chance of survival and said that if she did survive, she wouldn’t be able to walk or talk.
Today, Sinead is seven years old and has been cancer-free for five years. Described as a ‘miracle child’, not only can she walk and talk, but she is thriving.
Hayley puts her daughter’s survival down to advancements in medical research and faith.
“There’s no doubt that without the amazing team of doctors, surgeons and medical researchers that have helped Sinead she wouldn’t have survived.
Childhood cancer is the leading cause of death by disease of Australian children. Right now in WA, more than 120 children are fighting cancer.
Supported by Telethon, the Telethon Kids Institute specialises in research into childhood cancers, with a team of dedicated researchers striving to find more targeted treatments with fewer side effects. Dr Nick Gottardo is Co-Head of Brain Tumour Research.
“All of us here at Telethon Kids are motivated by making a difference for children with cancer and their families,” he said. “That's the driving motivation for every one of us here”.
Hayley is well aware that the ground-breaking research making such a difference to her family and others like them owes much to the generosity of West Australians who have donated to Telethon.
“Supporting Telethon inevitably saves lives,” she said. “You don’t ever think it is going to happen to you, but it might.
Jasmine is one of many young people who experienced the Telethon Holiday group at Autism West. Jasmine’s mother, Christina, said that school holidays can be an issue for the family.
“Holidays always present a large block of unstructured time without the routine of the school week. This can often result in her feeling periodically anxious and aimless”.
Christina said that the Telethon Holiday Group features a structured, social and welcoming environment that immediately sets both child and parent at rest. Parents of children with ASD are anxious as well about a myriad of reasons as to why their child may not “enjoy” the experience. The staff ensured that Jasmine was regulated and participated with other peers in a safe and supported setting.
The social and communication challenges faced by young people who have Autism Spectrum Disorder can mean many of them experience social isolation and bullying. This can result in significant mental health risks for later life, with depression being the most common diagnosis in adolescents and adults with autism.
Programs that give the young people a chance to develop their interests and abilities are critical for them as they give opportunities for success and help them to build resilience.
“It has been a godsend for our family as Jasmine now has a “place” where she goes to during the holidays with friends. She can also come home share these experiences with her us and her sister, Madeleine when they both return from respective outings. The confidence, self-esteem and happiness that Jasmine gains from independence has been amazing”.
Marc is our beautiful blue-eyed hero. At five months old he was diagnosed with a rare brain malformation called Lissencephaly (Smooth Brain). Marc is now five old and he is non-mobile and non-verbal and for the most part, the developmental level of a 3-6 month-old. Marc also has other severe health issues including Chronic Lung Disease. In the past 12 months, Marc has spent a total of 82 days as an inpatient of PMH and had more than 65 outpatient appointments.
Marc's condition is complex and degenerative. This, and a lack of funding, has meant we were unable to access any regular qualified respite. With the pressure and stress of this unrelenting journey as well as trying to fundraise, I nearly ended up having a complete breakdown.
During a two-week admission in February, Marc’s medical team and our PMH social worker could see how we desperately needed help and in home nursing support. We contacted Hannah's House asking if they would take us on and provide funding and a nurse until our NDIS funding was approved. Once we were home, Susan came out and met with us and week or so later our amazing nurse Liz was at our house for respite and support two days per week. This has been a complete godsend and has saved me from completely falling apart.
Having Liz to care for Marc and support our family has meant I have been able to be a mum again. Marc has also been able to get the 1:1 attention he deserves and needs that is more than just the medical, therapy and care essentials. I know this has made a huge difference to his quality of life.
Hannah’s House provides respite and palliative care for children in the family home with the support of Telethon.
When Brody, known as The Hurricane, was just a baby he faced the life-threatening disease Meningococcal B Meningitis.
His mother, Laura, said that as new parents, their first thought when Brody was unwell was to take him to the local doctor where he was diagnosed with a virus. But within 24 hours Laura and her husband were rushing Brody to Princess Margaret Children’s Hospital.
Laura said she watched as the doctors placed her small, helpless baby on the bed. They were pointing to his neck and explaining to us that he was stiff and had limited movement and then we heard the words “we think he has meningitis”.
“The doctor told us to go and make our phone calls to our family, as right now he only had a fifty-fifty chance of survival. The fight ahead, she explained, would be like a marathon.
Seven days went by, and with each day, the doctors marvelled at his recovery. We were told that while it doesn’t happen often, they do get miracle cases like ours.
The swelling and pressure on the brain of an infant can have tremendous long term affects. For six months after, the Hurricane suffered with extreme headaches.
Skip forward to now, the road to recovery is ongoing. Sleep has been the most difficult part, the headaches that would keep him up at night have now as a toddler progressed to frightening night terrors. Loud noises, bright light stimulation and crowds can be an overwhelming experience for him.
The Hurricane is now a thriving three year old, he is obsessed with anything transport related, be it cars, trucks, planes, anything with wheels! He loves to swim, to run, to climb, all things active!
Brody’s family supports the Amanda Young Foundation which is dedicated to reducing deaths in WA from meningococcal disease.