Wings For Eve
Donation protected
This is Eve.
**This Go Fund Me page has been created to generate the funds required for Eve and her family to relocate from Wagga Wagga to Canberra. This move would provide Eve and her family access to the Medical facilities they desperately need without the frequent trips to Sydney for weeks at a time. Sydney is a 5hr drive from Wagga Wagga which is impossible for Eve, forcing the family to fly. This is rather costly and places a significant burden on their financial situation. The Canberra region has two schools capable of providing Eve with the medical support she needs as well as providing her with a safe learning environment
The money raised during this campaign will go towards:
· Preparing the families current house in Wagga Wagga for sale
· Finding a new home in Canberra and preparing it for Eve
· Covering the cost of relocating the family to Canberra
Please read Eve's story - she is an incredible little girl, she and her family need our help because they cant do this on their own**
Eve was born in November 2012, during birth the Marzol family found out Eve had Down Syndrome, this was a massive shock; however, nothing could have prepared them for the news they received next.
Minutes after Eve was born, Doctors rushed Eve to the Special Care Nursery where they had to supply her with oxygen as well as needing to insert a Nasal Gastric tube as Eve was unable to feed orally due to her aspirating liquids. At this time, Doctors also discovered an Atrioventricular Septal Defect (AVSD) or in layman’s terms – 4 holes in her heart. Eve required open-heart surgery when she was 10 weeks old to repair the holes; however, she has residual leaks and will require further surgery in the future to repair the remaining two holes.
Around 8 weeks after she underwent open-heart surgery, Eve’s condition began to deteriorate resulting in multiple trips to the hospital both in Wagga and Sydney. During this time it was found that she had severe aspiration of fluids into her lungs as well as the beginnings of Very Early Onset Inflammatory Bowel Disease (VEO-IBD). The result of all of this was that Eve needed to be fed a very specific formula as it was found that she is allergic to all other forms of food as well as having to have a permanent feeding tube into her tummy.
It was during these frequent hospital trips that Doctors started to discover that Eve’s medical condition was for more complicated and complex than first thought and over the next few months a long list of additional problems/challenges that Eve faced were diagnosed, including:
· Down Syndrome
· Hypotonia (low muscle tone)
· AVSD repair (heart surgery)
· Inflammatory Bowel Disease (causing abdominal pain)
· Oropharyngeal Dysphagia (unsafe to eat or swallow)
· Bronchiectasis
· Fundoplication
· Eczema
· Sleep Disturbance
· Seizure disorder
· Chronic Gastritis
· Transient Arthralgia
· Gut Motility Disorder
· Bladder Retention Disorder
· Dangerously high sleep APONEA and HYPOPNEAS
· Atlantoaxial Instability
· A type of gastrointestinal dysautonomia – which has caused Eve to stop breathing requiring her to be resuscitated.
· Specific Immune Disorder
· Situational Hypoglycaemia
· Unable to communicate verbally
· Moderate Deafness.
This enormous list of complications has made life inside the Marzol household challenging to say the least. Eve requires 24-hour care, 7 days a week which resulted in Eve’s mum leaving her role as a Primary School Teacher to become Eve’s full time carer.
Over the next few years, as Doctors performed more tests on Eve, the diagnoses continued in an attempt to discover the root cause of all these issues. As Eve grew, it became apparent that she also suffered from a Central Brain Disorder and a Severe Oral Motor disorder. These make simple tasks such as eating or drinking extremely dangerous for Eve as she would aspirate the food/fluid into her lungs resulting in the need to use a Suction Machine and on occasion having to be resuscitated.
Eve also had major stomach surgery called a Fundoplication (Stomach Wrap) which helps to stop Eve from aspirating fluid and vomit onto her lungs. She is unable to be fed orally and is now fed directly into her stomach via a Gastronomy peg. Unfortunately, Eve has developed Bronchiectasis (damage and scarring to the lungs) due to the amount of fluid she had previously aspirated. This has made Eve more prone to chest infections and pneumonias.
Doctors have now prescribed 12 different medications to treat most of the issues Eve is battling; however, every day is an uphill battle with more and more complications arising with each trip to the hospital.
Eve’s medical care is ongoing requiring her to travel to Sydney every 2-4 months with each trip resulting in a 1 – 2 week stay.
Unfortunately, the bad news hasn’t stopped. When Eve is unwell, she can suffer from apneas, this means she will stop breathing and requires resuscitation. Eve has had her tonsils removed so that she can wear an apnea monitor whenever she sleeps ensuring that an alarm is sounded when Eve stops breathing.
Eve’s immune system is also compromised due to poor antibodies, this requires her to have weekly infusions of Immunoglobulin, which her Mum performs each week. To ensure that Eve’s body stays free from infections, her Mum needs to change her catheters four times a day.
Recently, Eve’s respiratory system has started to deteriorate requiring a new BiPAP (Bi-level Positive Airway Pressure) machine whenever she’s asleep. Not only is Eve unable to breath in oxygen at a safe level, she is also unable to expel carbon dioxide which can build up to dangerous levels without the use of the BiPAP machine. This machine prevents further damage to Eve’s brain and heart caused by the buildup of carbon dioxide.
On top of all Eve’s medical illnesses/complications, there is still the Down Syndrome. This includes the needs to Eve to attend physio, speech therapy and occupational therapy sessions on a regular basis.
Eve is a happy and loving 6 year old and thanks to the tireless efforts of her Mum, Dad and the Doctors she frequently visits, she continues to fight. Eve’s current intellectual capacity is that of an 8 to 18-month-old child. With the help of her older brother, Eve has just begun to walk in the last month which is an enormous milestone for this little fighter and proves she is not going to let any of these issues beat her.
Eve is currently homeschooled by her Mum due to her complex medical needs and disability. The move to Canberra would provide Eve with access to special needs schools capable of caring for her as well as the ability to provide her with an individualized education to suit her needs.
As you can imagine – all of the above has had an enormous impact on family life, there is an inordinate amount of stress and anxiety which no one should ever have to endure.
I have been friends with the Marzol family for over 10 years and I am in awe of the way they have continued to fight through every obstacle, letting nothing stop them from providing Eve with everything she needs. Eve’s parents are two of the most incredible people I’ve ever had the pleasure of knowing and they deserve every bit of help we can muster.
Your donation is greatly appreciated.
**This Go Fund Me page has been created to generate the funds required for Eve and her family to relocate from Wagga Wagga to Canberra. This move would provide Eve and her family access to the Medical facilities they desperately need without the frequent trips to Sydney for weeks at a time. Sydney is a 5hr drive from Wagga Wagga which is impossible for Eve, forcing the family to fly. This is rather costly and places a significant burden on their financial situation. The Canberra region has two schools capable of providing Eve with the medical support she needs as well as providing her with a safe learning environment
The money raised during this campaign will go towards:
· Preparing the families current house in Wagga Wagga for sale
· Finding a new home in Canberra and preparing it for Eve
· Covering the cost of relocating the family to Canberra
Please read Eve's story - she is an incredible little girl, she and her family need our help because they cant do this on their own**
Eve was born in November 2012, during birth the Marzol family found out Eve had Down Syndrome, this was a massive shock; however, nothing could have prepared them for the news they received next.
Minutes after Eve was born, Doctors rushed Eve to the Special Care Nursery where they had to supply her with oxygen as well as needing to insert a Nasal Gastric tube as Eve was unable to feed orally due to her aspirating liquids. At this time, Doctors also discovered an Atrioventricular Septal Defect (AVSD) or in layman’s terms – 4 holes in her heart. Eve required open-heart surgery when she was 10 weeks old to repair the holes; however, she has residual leaks and will require further surgery in the future to repair the remaining two holes.
Around 8 weeks after she underwent open-heart surgery, Eve’s condition began to deteriorate resulting in multiple trips to the hospital both in Wagga and Sydney. During this time it was found that she had severe aspiration of fluids into her lungs as well as the beginnings of Very Early Onset Inflammatory Bowel Disease (VEO-IBD). The result of all of this was that Eve needed to be fed a very specific formula as it was found that she is allergic to all other forms of food as well as having to have a permanent feeding tube into her tummy.
It was during these frequent hospital trips that Doctors started to discover that Eve’s medical condition was for more complicated and complex than first thought and over the next few months a long list of additional problems/challenges that Eve faced were diagnosed, including:
· Down Syndrome
· Hypotonia (low muscle tone)
· AVSD repair (heart surgery)
· Inflammatory Bowel Disease (causing abdominal pain)
· Oropharyngeal Dysphagia (unsafe to eat or swallow)
· Bronchiectasis
· Fundoplication
· Eczema
· Sleep Disturbance
· Seizure disorder
· Chronic Gastritis
· Transient Arthralgia
· Gut Motility Disorder
· Bladder Retention Disorder
· Dangerously high sleep APONEA and HYPOPNEAS
· Atlantoaxial Instability
· A type of gastrointestinal dysautonomia – which has caused Eve to stop breathing requiring her to be resuscitated.
· Specific Immune Disorder
· Situational Hypoglycaemia
· Unable to communicate verbally
· Moderate Deafness.
This enormous list of complications has made life inside the Marzol household challenging to say the least. Eve requires 24-hour care, 7 days a week which resulted in Eve’s mum leaving her role as a Primary School Teacher to become Eve’s full time carer.
Over the next few years, as Doctors performed more tests on Eve, the diagnoses continued in an attempt to discover the root cause of all these issues. As Eve grew, it became apparent that she also suffered from a Central Brain Disorder and a Severe Oral Motor disorder. These make simple tasks such as eating or drinking extremely dangerous for Eve as she would aspirate the food/fluid into her lungs resulting in the need to use a Suction Machine and on occasion having to be resuscitated.
Eve also had major stomach surgery called a Fundoplication (Stomach Wrap) which helps to stop Eve from aspirating fluid and vomit onto her lungs. She is unable to be fed orally and is now fed directly into her stomach via a Gastronomy peg. Unfortunately, Eve has developed Bronchiectasis (damage and scarring to the lungs) due to the amount of fluid she had previously aspirated. This has made Eve more prone to chest infections and pneumonias.
Doctors have now prescribed 12 different medications to treat most of the issues Eve is battling; however, every day is an uphill battle with more and more complications arising with each trip to the hospital.
Eve’s medical care is ongoing requiring her to travel to Sydney every 2-4 months with each trip resulting in a 1 – 2 week stay.
Unfortunately, the bad news hasn’t stopped. When Eve is unwell, she can suffer from apneas, this means she will stop breathing and requires resuscitation. Eve has had her tonsils removed so that she can wear an apnea monitor whenever she sleeps ensuring that an alarm is sounded when Eve stops breathing.
Eve’s immune system is also compromised due to poor antibodies, this requires her to have weekly infusions of Immunoglobulin, which her Mum performs each week. To ensure that Eve’s body stays free from infections, her Mum needs to change her catheters four times a day.
Recently, Eve’s respiratory system has started to deteriorate requiring a new BiPAP (Bi-level Positive Airway Pressure) machine whenever she’s asleep. Not only is Eve unable to breath in oxygen at a safe level, she is also unable to expel carbon dioxide which can build up to dangerous levels without the use of the BiPAP machine. This machine prevents further damage to Eve’s brain and heart caused by the buildup of carbon dioxide.
On top of all Eve’s medical illnesses/complications, there is still the Down Syndrome. This includes the needs to Eve to attend physio, speech therapy and occupational therapy sessions on a regular basis.
Eve is a happy and loving 6 year old and thanks to the tireless efforts of her Mum, Dad and the Doctors she frequently visits, she continues to fight. Eve’s current intellectual capacity is that of an 8 to 18-month-old child. With the help of her older brother, Eve has just begun to walk in the last month which is an enormous milestone for this little fighter and proves she is not going to let any of these issues beat her.
Eve is currently homeschooled by her Mum due to her complex medical needs and disability. The move to Canberra would provide Eve with access to special needs schools capable of caring for her as well as the ability to provide her with an individualized education to suit her needs.
As you can imagine – all of the above has had an enormous impact on family life, there is an inordinate amount of stress and anxiety which no one should ever have to endure.
I have been friends with the Marzol family for over 10 years and I am in awe of the way they have continued to fight through every obstacle, letting nothing stop them from providing Eve with everything she needs. Eve’s parents are two of the most incredible people I’ve ever had the pleasure of knowing and they deserve every bit of help we can muster.
Your donation is greatly appreciated.
Fundraising team (2)
Cameron Prior
Organizer
Dunlop ACT
Rachael Prior
Team member
