Help Feed Bryn
Donation protected
At first glance, Bryn Sykes is like any other five year old Australian boy. He loves watching cartoons and listening to music. He has countless hours of fun bouncing on his trampoline, and he can't get enough tickle fights on the floor.
But in reality, Bryn Sykes isn't like most five year old boys. Bryn was born with Fragile X Syndrome, a genetic condition which often causes significant intellectual disability, some physical disabilities, and is the leading genetic cause of autism.
Bryn is severely autistic. He cannot speak. He is still in nappies. He tires easily because of extremely low muscle tone (a common characteristic of Fragile X Syndrome sufferers). Bryn suffers from acid reflux and has never taken food orally – he has been tube fed since he was only weeks old.
Early in his life, Bryn had a naso-gastric tube – a thin, flexible tube which was inserted through his nose and down the back of his throat, into his stomach. Bryn was connected to an electronic pump which slowly fed him prescription formula all day, every day. Bryn was not strong enough to carry the pump himself, so one of his parents or a carer was required to follow him around for hours a day to ensure he was getting the nutrition he needed to grow. Along with the prescription formula, he was taking double to triple the adult dose of a prescription anti-reflux medication to try and control his almost constant projectile vomiting.
When Bryn was about 18 months old, he had a fundoplication, a procedure intended to strengthen the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This procedure was combined with the installation of a “button” in his stomach which could be opened, and a tube inserted, which would replace the naso-gastric tube. For the first time since he was only a few weeks old, Bryn's handsome face could be seen without tape and tubes.
Despite the surgery and prescription formula, Bryn was still showing all the signs of acid reflux. The surgery had made it impossible for him to vomit, but he still had the acid building up in his stomach. Bryn now had to be “vented” at least once a day – his feeding tube had to be inserted, and his excess stomach acid drained out. Sometimes the build-up was so severe, when he wasn't screaming in pain, he would faint and have to be admitted to hospital. Once admitted, he would be placed on a drip to administer fluids and sugar intravenously until he seemed healthy enough to go home, and the whole cycle would start again.
The never-ending parade of doctors, specialists, nutritionists, dieticians and therapists were out of ideas. They had no idea why Bryn's little body wouldn't tolerate anything they recommended. As he grew taller, he became extremely thin and frail. He had a hard time holding his head up. He could hardly walk, and he couldn't begin to keep up with his older brother and sister. He spent most of his time either asleep or screaming in pain, and still he grew thinner and thinner. Bryn was slowly starving.
One nutritionist finally suggested a particular formula for Bryn, Sustagen Kid Essentials, which so far seems to be working. Bryn has been on the formula for just over a month and has already put on a kilo, something he hadn't managed to do for more than two years. He has more energy, so instead of spending his whole day sleeping, he can enjoy his trampoline in the sunshine. Bryn is starting Prep this year – he has wonderful opportunities for learning and development in front of him this year.
One thing is standing in Bryn's way – the financial cost of the formula that has given him a chance. Sustagen Kid Essentials costs $30 a tin, and Bryn goes through almost a whole tin each day. Unlike the prescription formulas Bryn has used in the past, Sustagen Kid Essentials is not on the PBS and is not eligible for any kind of rebate or reduced cost.
Bryn's mother, Dr Shelley McRae, is a single parent of three children. She receives the carer's pension. After paying for Bryn's weekly formula requirements, there's isn't a lot of money left. She has been turned away by Centrelink, Medicare and her private health fund. The nutritionist have no other alternatives that would be suitable for Bryn.
When faced with the decision to pay for Bryn's formula or pay the electricity bill, the choice is obvious – Shelley wants to keep her son alive and healthy. But because the system doesn't allow for exceptional circumstances, Shelley will have to continue to make decisions about what bills do and don't get paid just so she can continue to feed her son.
Her older children, Rohan and Freya, aren't able to participate in their school's extra-curricular activities, there are no family trips to the zoo or even the occasional treat at Maccas, because there simply isn't any money after feeding Bryn.
If you feel you can, we are asking for absolutely anything you can spare to help this family. Bryn is a loving, gorgeous little boy who deserves the opportunity to grow and develop to his full potential.
Thank you.
Shelley, Rohan, Freya, Bryn and Kitara the dog.
But in reality, Bryn Sykes isn't like most five year old boys. Bryn was born with Fragile X Syndrome, a genetic condition which often causes significant intellectual disability, some physical disabilities, and is the leading genetic cause of autism.
Bryn is severely autistic. He cannot speak. He is still in nappies. He tires easily because of extremely low muscle tone (a common characteristic of Fragile X Syndrome sufferers). Bryn suffers from acid reflux and has never taken food orally – he has been tube fed since he was only weeks old.
Early in his life, Bryn had a naso-gastric tube – a thin, flexible tube which was inserted through his nose and down the back of his throat, into his stomach. Bryn was connected to an electronic pump which slowly fed him prescription formula all day, every day. Bryn was not strong enough to carry the pump himself, so one of his parents or a carer was required to follow him around for hours a day to ensure he was getting the nutrition he needed to grow. Along with the prescription formula, he was taking double to triple the adult dose of a prescription anti-reflux medication to try and control his almost constant projectile vomiting.
When Bryn was about 18 months old, he had a fundoplication, a procedure intended to strengthen the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This procedure was combined with the installation of a “button” in his stomach which could be opened, and a tube inserted, which would replace the naso-gastric tube. For the first time since he was only a few weeks old, Bryn's handsome face could be seen without tape and tubes.
Despite the surgery and prescription formula, Bryn was still showing all the signs of acid reflux. The surgery had made it impossible for him to vomit, but he still had the acid building up in his stomach. Bryn now had to be “vented” at least once a day – his feeding tube had to be inserted, and his excess stomach acid drained out. Sometimes the build-up was so severe, when he wasn't screaming in pain, he would faint and have to be admitted to hospital. Once admitted, he would be placed on a drip to administer fluids and sugar intravenously until he seemed healthy enough to go home, and the whole cycle would start again.
The never-ending parade of doctors, specialists, nutritionists, dieticians and therapists were out of ideas. They had no idea why Bryn's little body wouldn't tolerate anything they recommended. As he grew taller, he became extremely thin and frail. He had a hard time holding his head up. He could hardly walk, and he couldn't begin to keep up with his older brother and sister. He spent most of his time either asleep or screaming in pain, and still he grew thinner and thinner. Bryn was slowly starving.
One nutritionist finally suggested a particular formula for Bryn, Sustagen Kid Essentials, which so far seems to be working. Bryn has been on the formula for just over a month and has already put on a kilo, something he hadn't managed to do for more than two years. He has more energy, so instead of spending his whole day sleeping, he can enjoy his trampoline in the sunshine. Bryn is starting Prep this year – he has wonderful opportunities for learning and development in front of him this year.
One thing is standing in Bryn's way – the financial cost of the formula that has given him a chance. Sustagen Kid Essentials costs $30 a tin, and Bryn goes through almost a whole tin each day. Unlike the prescription formulas Bryn has used in the past, Sustagen Kid Essentials is not on the PBS and is not eligible for any kind of rebate or reduced cost.
Bryn's mother, Dr Shelley McRae, is a single parent of three children. She receives the carer's pension. After paying for Bryn's weekly formula requirements, there's isn't a lot of money left. She has been turned away by Centrelink, Medicare and her private health fund. The nutritionist have no other alternatives that would be suitable for Bryn.
When faced with the decision to pay for Bryn's formula or pay the electricity bill, the choice is obvious – Shelley wants to keep her son alive and healthy. But because the system doesn't allow for exceptional circumstances, Shelley will have to continue to make decisions about what bills do and don't get paid just so she can continue to feed her son.
Her older children, Rohan and Freya, aren't able to participate in their school's extra-curricular activities, there are no family trips to the zoo or even the occasional treat at Maccas, because there simply isn't any money after feeding Bryn.
If you feel you can, we are asking for absolutely anything you can spare to help this family. Bryn is a loving, gorgeous little boy who deserves the opportunity to grow and develop to his full potential.
Thank you.
Shelley, Rohan, Freya, Bryn and Kitara the dog.
Organizer
Jen Homewood
Organizer
Eatons Hill QLD
