FEED THE DUCKS FOR ANNABELLE ON MAY FIFTEEN
A beautiful healthy little girl with a radiant smile, who loved the outdoors. That was Annabelle Rose Brown, until one day her parents, Shaun and Amelia, awoke to find their beloved younger daughter had suddenly passed in her sleep in July 2016, weeks after her second birthday.
“I can only equate the shock of losing her, to like a bomb being dropped on our lives,” Amelia said. “She had the sweetest nature, she was such an incredible child, our dream come true, then we woke up to a living nightmare. The older children were not home, and Shaun had been on days off, but I wouldn’t be here today if I had found her on my own that morning.”
“I’m still trying to piece together what happened that day, that week, that month. “Everyone in our family has been absolutely devastated and in disbelief about what has happened”; no one more than Amelia and Shaun.
“The feeling of losing a child is absolutely unbearable and you never think it will happen to you, nothing can compare. No parent should lay their child to rest. We are so grateful we have received the most incredible support and care from our family, our friends and the whole Gladstone community.
Amelia and husband Shaun’s disbelief grew when they heard after the QLD Coroner’s findings that Annabelle had died from Tuberous Sclerosis Complex (TSC), a condition so rare, that her GP, paediatric doctor, midwives, obstetrician, baby health clinic nurses and her dentist had failed to connect all the subtle signs of the condition.
“There was always a simple answer. A rash could be eczema, a birthmark, for something to be fatal would be so rare, not one of them seemed concerned. To all she seemed to be a healthy, bright, active, bubbly little girl.
“We never got a chance to fight for her life,” Amelia said. “If we had known, we would have done everything we could to save her.”
It’s estimated that one million people worldwide suffer from TSC, 2000 of them in Australia: “The genetics of it are very complex, there are still so many unanswered questions” Amelia said. “We’ve been in contact with Genetics Queensland, they recommended that we and our other children be tested, in case they have it too.”
TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. Annabelle had developed undiagnosed tumours in her heart and brain which caused her death from heart failure, but most diagnoses are predicated with instances of epilepsy, seizures or an autism diagnosis. There is no known cure, yet.
“It is something that is able to be detected in-utero but it was obviously missed; one of my hopes for the fundraising is that money can be used to fund education for health professionals in regional areas, and to ensure routine screening for women who are pregnant. I will always worry if I had just had an ultrasound at 30 weeks, it would have been found ”
Transforming their grief into action, Annabelle’s family is hosting a morning tea fundraiser from 10 am until 3 pm at Savour the Flavour, the Toondoon Botanic Gardens Lakeside Café, on TSC Global Awareness Day on May 15, with all proceeds from the mulit-draw raffles and refreshments going to Tuberous Sclerosis Australia.
“Annabelle loved nature and animals, she loved most was to go down to the Botanic Gardens and feed her duckies, so we would go there often. The gardens are a special place for us now and that’s why we’re holding the High Tea there,” she said.
Amelia says it’s become a personal battle for her, husband Shaun: “It’s been an incredibly difficult journey over the last two years.”
“I don’t think there’s anything I hate in the world more than tuberous sclerosis. It stole our baby girl.”
If you can’t make it down to Savour the Flavour on May 15 you can still help fund better research and treatment for TSC by visiting https://tsa.org.au/help/annabelle or to RSVP for High Tea visit https://www.facebook.com/events/1831634900471673/
And if you or anyone you know is struggling with grief, please contact Lifeline on 131114