Caring for Coey
Donation protected
On 25th February 2022, Hayley and Trent were given the news that their loveable, happy-go-lucky 11 month old son Coen, has Gabriele de vries Syndrome.
Anyone who has met Coen knows his infectious giggle and sees how much he adores his big brother, Miles. They know how hard he and his parents have worked to see him grow, flourish and take on any challenge he faces.
Coen is one of only 15 children in the world with Gabriele de vries syndrome. Whilst outcomes are varied, it is characterized by mild-to-profound developmental delay / intellectual disability and a wide spectrum of functional and morphologic abnormalities. People with Gabriele de vries often experience feeding difficulties and other systemic difficulties, including congenital brain, eye, heart, kidney, genital, and/or skeletal system anomalies.
Coen has had a nasal gastric tube for most of his life and is due to have major surgery in the next few months for a laryngeal cleft which will require a stay in the ICU. This cleft has meant that since birth, any milk or food he has ingested has had potential to rush back up into his lungs and cause him to aspirate, leading to choking, respiratory infection and potential pneumonia. He has severe plagiocephaly (flat head), has a suspected vascular ring and ventral septal defect in his heart, and has experienced other recurrent infections requiring multiple hospitalizations at Campbelltown, Randwick and Westmead Children’s hospitals.
People with Gabriele de vries syndrome also often have neurologic challenges, including hypotonia and gait abnormalities. Coen has hypotonia, which has meant he is not yet crawling, and has just begun to support himself in a seated position. Hypotonia has affected Coen’s ability to meet his milestones and has led to his severe sleep-apnea, which can cause his oxygen levels to drop dangerously low in his sleep. This has been considerably stressful for his family.
Children with Gabriele de vries syndrome are also more likely to experience difficulties associated with anxiety, ADHD, Autism and Schizoaffective disorder. Currently Coen has also been diagnosed with a Global Developmental Delay secondary to his Gabriele de vries syndrome.
Coen has an amazing support system and Hayley and Trent are fierce in their advocacy for their son. He is currently under a complex medical team at Westmead Children’s hospital and has a small amount of funding allocated to him under the NDIS. However, the medical costs associated with helping Coey to thrive are substantial. He has started physiotherapy, speech therapy and occupational therapy and will likely need these on an ongoing basis, alongside psychological therapies as he gets older. He will also potentially need various medical equipment to help him meet his milestones and be more functional in his everyday life. These therapies and tools (and a LOT of love, time and effort from Hayley, Trent and grandparents) have already been instrumental in helping Coen to progress.
We are creating this page to show our love and support for Coen, Hayley, Trent and Miles. This GoFundMe page will enable people with a desire to help, the opportunity to do so. All funds donated will be used to pay for Coen’s ongoing out-of-pocket medical treatment and future medical costs that are not met due to limited resources under the NDIS. It will also be used to help offset any other expenses over the next few years including accommodation close to hospitals and day-to-day living expenses. Unfortunately, Hayley will likely not be able to return to work as planned this year. Some people will know that Hayley had a serious injury at work in 2014 which left her with slipped discs in her vertebrae, impinged nerves and reduced nerve function in her legs, leading to reduced physical functioning in her back and torso and chronic pain. Hayley is due to have her sixth back surgery this week, and following her recovery from this, will need to take time to coordinate Coen’s intensive early interventions and medical procedures. This alone will place a huge amount of emotional and financial stress on their family.
Thank you for reading and please share this page on your social channels so we can help support Coen and the VDJ clan as they seek to see him flourish and grow to become the healthiest, warm-hearted boy we all know him to be.
With love,
Jodie and all those on team VDJ
Anyone who has met Coen knows his infectious giggle and sees how much he adores his big brother, Miles. They know how hard he and his parents have worked to see him grow, flourish and take on any challenge he faces.
Coen is one of only 15 children in the world with Gabriele de vries syndrome. Whilst outcomes are varied, it is characterized by mild-to-profound developmental delay / intellectual disability and a wide spectrum of functional and morphologic abnormalities. People with Gabriele de vries often experience feeding difficulties and other systemic difficulties, including congenital brain, eye, heart, kidney, genital, and/or skeletal system anomalies.
Coen has had a nasal gastric tube for most of his life and is due to have major surgery in the next few months for a laryngeal cleft which will require a stay in the ICU. This cleft has meant that since birth, any milk or food he has ingested has had potential to rush back up into his lungs and cause him to aspirate, leading to choking, respiratory infection and potential pneumonia. He has severe plagiocephaly (flat head), has a suspected vascular ring and ventral septal defect in his heart, and has experienced other recurrent infections requiring multiple hospitalizations at Campbelltown, Randwick and Westmead Children’s hospitals.
People with Gabriele de vries syndrome also often have neurologic challenges, including hypotonia and gait abnormalities. Coen has hypotonia, which has meant he is not yet crawling, and has just begun to support himself in a seated position. Hypotonia has affected Coen’s ability to meet his milestones and has led to his severe sleep-apnea, which can cause his oxygen levels to drop dangerously low in his sleep. This has been considerably stressful for his family.
Children with Gabriele de vries syndrome are also more likely to experience difficulties associated with anxiety, ADHD, Autism and Schizoaffective disorder. Currently Coen has also been diagnosed with a Global Developmental Delay secondary to his Gabriele de vries syndrome.
Coen has an amazing support system and Hayley and Trent are fierce in their advocacy for their son. He is currently under a complex medical team at Westmead Children’s hospital and has a small amount of funding allocated to him under the NDIS. However, the medical costs associated with helping Coey to thrive are substantial. He has started physiotherapy, speech therapy and occupational therapy and will likely need these on an ongoing basis, alongside psychological therapies as he gets older. He will also potentially need various medical equipment to help him meet his milestones and be more functional in his everyday life. These therapies and tools (and a LOT of love, time and effort from Hayley, Trent and grandparents) have already been instrumental in helping Coen to progress.
We are creating this page to show our love and support for Coen, Hayley, Trent and Miles. This GoFundMe page will enable people with a desire to help, the opportunity to do so. All funds donated will be used to pay for Coen’s ongoing out-of-pocket medical treatment and future medical costs that are not met due to limited resources under the NDIS. It will also be used to help offset any other expenses over the next few years including accommodation close to hospitals and day-to-day living expenses. Unfortunately, Hayley will likely not be able to return to work as planned this year. Some people will know that Hayley had a serious injury at work in 2014 which left her with slipped discs in her vertebrae, impinged nerves and reduced nerve function in her legs, leading to reduced physical functioning in her back and torso and chronic pain. Hayley is due to have her sixth back surgery this week, and following her recovery from this, will need to take time to coordinate Coen’s intensive early interventions and medical procedures. This alone will place a huge amount of emotional and financial stress on their family.
Thank you for reading and please share this page on your social channels so we can help support Coen and the VDJ clan as they seek to see him flourish and grow to become the healthiest, warm-hearted boy we all know him to be.
With love,
Jodie and all those on team VDJ
Organizer and beneficiary
Jodie Schroder
Organizer
The Oaks, NSW
Hayley van der Jagt
Beneficiary