Let Hayden Breath
Donation protected
Introducing Hayden Greenstreet, a brave young man that has had endure more than anyone should in his young life time.
Hayden was born with Down Syndrome, however that was only the surface of the difficulties he was going to face. In his 23 years Hayden has undergone 25 surgeries, countless anaesthetics and many procedures to provide him what many of us may take for granted.
To fully understand the journey Hayden has been on is to know just some of the significant events in his life. Listed below is a summary from the diary that his mother Diane has kept so that his medical team is kept aware of the multiple issues that he has lived with:
• At 12 hours of age – diagnosed with Duodenal Atrasia – and undergoes a repair of a blocked stomach
• At 4 months of age – undergoes a AV Canal repair – (ASVSD) 4 holes repaired in his heart
• At 8 months of age – diagnosed with Secondary Pulmonary Hypertension (now known as Pulmonary Arterial Hypertension (PAH) a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries (called pulmonary arteries) rises far above normal levels
• At 22 months of age – diagnosed with Hirschsprung Disease – a paralysis of the large intestine. It occurs due to poor muscle movement in the bowel. It is a congenital condition, which means it was present from birth.
• At 24 months of age – Endocarditis – infection in the centre of his heart requiring 8 weeks admission in hospital for intravenous antibiotics
• At 2 years 7 months – undergoes Surgery for Hirschsprung Disease - a 5 hour surgery to remove part of his bowel and place a temporary stoma (colostomy bag). The stoma would go on to prolapse 3 times requiring an operation each time to repair. On final closure Hayden developed septicaemia and seizure
• At 3 – 4 years of age – diagnosed with multiple partial bowel blockages, and undergoes 3 separate surgeries to remove adhesions and a hernia repair causing the partial blockages.
• At 5 years of age - Hayden becomes the youngest child and 4th in Australia to receive a Caecostomy button. A button used to perform bowel washouts on a nightly basis and is still performed today at 23 years of age. Hayden was toilet trained within 2 weeks of this procedure being performed.
• At 7 years of age – Pulmonary Hypertension pressures increase
• At 8 years of age – Hayden begins yearly visits to Melbourne for consultations with pediatric Pulmonary Hypertension Specialists.
• At 10 years of age – Hayden becomes the first child with Secondary Pulmonary Hypertension in Australia to trial a promising new drug with the hope of extending his life expectancy.
• At 11 years of age – requires a Tonsillectomy resulting in a haemorrhage and a lose of 50% of his blood volume.
• At 14 years of age – a new combination drug therapy which seems to stabilise deterioration of Pulmonary Hypertension condition.
• Hayden in the same year is also diagnosed with Cholesteatomas in both ears – a benign tumour that erodes away the tissue in which it attaches to. Ten surgeries would later follow between 14 and 17 years of age with multiple attempts to remove the tumours and clean away granulation tissue. These surgeries would take a toll on Hayden’s hearing requiring him to have a Cochlear BAHA hearing aid implant inserted.
• At 18 years of age – 3rd July 2010, his sister finds him unconscious; Hayden has had a cardiac arrest. His step father responds with CPR after hearing his sister’s distressed calls. Hayden responds and an ambulance is called. Hayden over the next 12 months goes on to have 10 more pressure pain attacks resembling and clinically presenting as heart attacks causing increasing damage to his heart.
• At 19 years of age – Hayden becomes the first adult in the world to undergo an experimental surgery called the Potts Shunt. It involves putting a shunt between his pulmonary artery and the aorta to act as a release valve for the ever increasing pressure in his pulmonary artery.
• At 21 years of age – pressure pain returns due to blood imbalances associated with the Potts Shunt. Hayden begins to undergo regular venepuncture to remove the excess red blood cells (a bag of blood taken from him)
• At 22- 23 years of age – suffering from increased regularity of pressure pain attacks; increase breathlessness and obvious reduced exercise intolerance – Hayden is diagnosed as being in right side heart failure.
The above is only but a brief outline of the major events in his life, between these are countless tests, examinations and procedures to arrive at diagnosis for the 3 major conditions he has been afflicted with.
Regardless of all of this, Hayden has constantly maintained a will to live and a zest for life like no other we know. He has a remarkable way of impacting on the life of everyone he meets. Hayden is always positive regardless of his illness, laughing, joking and Giving cheek everywhere he goes and with whomever he meets.
Although his will to live is strong, Hayden’s heart is dying, and his brave family are doing their best to keep him as comfortable and happy as possible. There are no miracles in this story, no more medications, or ground breaking surgical options and to make matters worse Hayden he is not eligible for a heart lung transplant.
You may ask given all this why are we seeking your support. Well given his deteriorating health, Hayden is in need of a portable oxygen concentrator (SimplyGo Mini). Having access this specialised equipment will enable him to attend his daily program and spend time with his friends for as long as he wishes to. As Hayden becomes more incapacitated Hayden will require more specialised equipment such as a new pressure mattress for his hospital bed. These specialised needs come at a cost that are beyond the means of him and his family. The portable oxygen concentrator costs approximately $5,300, and pressure mattresses are valued between $1,500 and $2,000.
Hayden’s devoted mum is a single parent and cares for Hayden along with his sister and brother. She has fought relentlessly to give Hayden a quality life while also providing for the rest of her beautiful family. The increasing costs keep them under constant strain and now shadow what precious time is left for creating wonderful memories.
We are hoping that creating this page will go some way to alleviate some of strain through generating financial support needed to purchase a new portable oxygen machine and pressure mattress for Hayden.
Any assistance that you can provide would be welcomed no matter how small for Hayden.
Hayden was born with Down Syndrome, however that was only the surface of the difficulties he was going to face. In his 23 years Hayden has undergone 25 surgeries, countless anaesthetics and many procedures to provide him what many of us may take for granted.
To fully understand the journey Hayden has been on is to know just some of the significant events in his life. Listed below is a summary from the diary that his mother Diane has kept so that his medical team is kept aware of the multiple issues that he has lived with:
• At 12 hours of age – diagnosed with Duodenal Atrasia – and undergoes a repair of a blocked stomach
• At 4 months of age – undergoes a AV Canal repair – (ASVSD) 4 holes repaired in his heart
• At 8 months of age – diagnosed with Secondary Pulmonary Hypertension (now known as Pulmonary Arterial Hypertension (PAH) a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries (called pulmonary arteries) rises far above normal levels
• At 22 months of age – diagnosed with Hirschsprung Disease – a paralysis of the large intestine. It occurs due to poor muscle movement in the bowel. It is a congenital condition, which means it was present from birth.
• At 24 months of age – Endocarditis – infection in the centre of his heart requiring 8 weeks admission in hospital for intravenous antibiotics
• At 2 years 7 months – undergoes Surgery for Hirschsprung Disease - a 5 hour surgery to remove part of his bowel and place a temporary stoma (colostomy bag). The stoma would go on to prolapse 3 times requiring an operation each time to repair. On final closure Hayden developed septicaemia and seizure
• At 3 – 4 years of age – diagnosed with multiple partial bowel blockages, and undergoes 3 separate surgeries to remove adhesions and a hernia repair causing the partial blockages.
• At 5 years of age - Hayden becomes the youngest child and 4th in Australia to receive a Caecostomy button. A button used to perform bowel washouts on a nightly basis and is still performed today at 23 years of age. Hayden was toilet trained within 2 weeks of this procedure being performed.
• At 7 years of age – Pulmonary Hypertension pressures increase
• At 8 years of age – Hayden begins yearly visits to Melbourne for consultations with pediatric Pulmonary Hypertension Specialists.
• At 10 years of age – Hayden becomes the first child with Secondary Pulmonary Hypertension in Australia to trial a promising new drug with the hope of extending his life expectancy.
• At 11 years of age – requires a Tonsillectomy resulting in a haemorrhage and a lose of 50% of his blood volume.
• At 14 years of age – a new combination drug therapy which seems to stabilise deterioration of Pulmonary Hypertension condition.
• Hayden in the same year is also diagnosed with Cholesteatomas in both ears – a benign tumour that erodes away the tissue in which it attaches to. Ten surgeries would later follow between 14 and 17 years of age with multiple attempts to remove the tumours and clean away granulation tissue. These surgeries would take a toll on Hayden’s hearing requiring him to have a Cochlear BAHA hearing aid implant inserted.
• At 18 years of age – 3rd July 2010, his sister finds him unconscious; Hayden has had a cardiac arrest. His step father responds with CPR after hearing his sister’s distressed calls. Hayden responds and an ambulance is called. Hayden over the next 12 months goes on to have 10 more pressure pain attacks resembling and clinically presenting as heart attacks causing increasing damage to his heart.
• At 19 years of age – Hayden becomes the first adult in the world to undergo an experimental surgery called the Potts Shunt. It involves putting a shunt between his pulmonary artery and the aorta to act as a release valve for the ever increasing pressure in his pulmonary artery.
• At 21 years of age – pressure pain returns due to blood imbalances associated with the Potts Shunt. Hayden begins to undergo regular venepuncture to remove the excess red blood cells (a bag of blood taken from him)
• At 22- 23 years of age – suffering from increased regularity of pressure pain attacks; increase breathlessness and obvious reduced exercise intolerance – Hayden is diagnosed as being in right side heart failure.
The above is only but a brief outline of the major events in his life, between these are countless tests, examinations and procedures to arrive at diagnosis for the 3 major conditions he has been afflicted with.
Regardless of all of this, Hayden has constantly maintained a will to live and a zest for life like no other we know. He has a remarkable way of impacting on the life of everyone he meets. Hayden is always positive regardless of his illness, laughing, joking and Giving cheek everywhere he goes and with whomever he meets.
Although his will to live is strong, Hayden’s heart is dying, and his brave family are doing their best to keep him as comfortable and happy as possible. There are no miracles in this story, no more medications, or ground breaking surgical options and to make matters worse Hayden he is not eligible for a heart lung transplant.
You may ask given all this why are we seeking your support. Well given his deteriorating health, Hayden is in need of a portable oxygen concentrator (SimplyGo Mini). Having access this specialised equipment will enable him to attend his daily program and spend time with his friends for as long as he wishes to. As Hayden becomes more incapacitated Hayden will require more specialised equipment such as a new pressure mattress for his hospital bed. These specialised needs come at a cost that are beyond the means of him and his family. The portable oxygen concentrator costs approximately $5,300, and pressure mattresses are valued between $1,500 and $2,000.
Hayden’s devoted mum is a single parent and cares for Hayden along with his sister and brother. She has fought relentlessly to give Hayden a quality life while also providing for the rest of her beautiful family. The increasing costs keep them under constant strain and now shadow what precious time is left for creating wonderful memories.
We are hoping that creating this page will go some way to alleviate some of strain through generating financial support needed to purchase a new portable oxygen machine and pressure mattress for Hayden.
Any assistance that you can provide would be welcomed no matter how small for Hayden.
Organizer
Melinda Taylor
Organizer
Blue Haven, NSW