for Lily
Donation protected
It breaks my heart to be creating this page for my beautiful Niece Lily.
Lily had just turned 3 months old when she came down with a little bit of a cold and was a little wheezy so we were also thinking maybe it could be asthma. If only. She went to the doctors and was diagnosed with bronchiolitis, a common chest infection in young children.
Her breathing got worse and she was admitted to hospital on 9/11. Once there she was put on antibiotics for the bronchiolitis and her heart rate monitored as it was high. She had nose prongs in as they thought her lung had collapsed, these were to ensure she was getting enough oxygen and try to open up her lungs. She was placed in high care in the pediatrics ward.
On 10/11 Lily went into cardiac arrest and they performed CPR on her. She was transferred to the NICU so they could stabilise her before being flown to Sydney Children's Hospital at Randwick. Her heart rate was over 200 beats per minute and her lungs were struggling to breathe.
On 11/11, it was found that an infection caused by the bronchiolitis and another cold virus she was carrying had spread to her heart. They found that her heart was enlarged and she has been diagnosed with cardio myopathy- chronic disease of the heart muscle. Because of the pressure from her enlarged heart, she was struggling to breathe.
By this time Lily was fully sedated and her little body was being run by 11 medications and a number of machines including a breathing tube and a central line to her heart to control it from beating too fast. Her liver and kidneys weren't functioning properly as they took the hard hit from when she had cpr.
During all this doctors were concerned for Lily's brain and the effect the lack of oxygen could have caused. Because of the machines hooked up to her, they couldn't do an MRI.
On 15/11 Lily opened her eyes and although still heavily sedated was able to look around the room and at everyone who talked to her. Things were looking up as her kidney and liver functions were improving and her lungs were clearing. Her heart was the only concern at this point.
On 16/11 Lily had 8 seizures during the night, and the following night was a further 3. An MRI was ordered to be done ASAP.
On 19/11 Lily had her MRI. It was found that the lack of oxygen had not effected her brain, but they found that Lily was showing signs of a brain disorder called leukodystrophy.
Leukodystrphy Is a rare, usually genetic disorder (although can be caused by a mutated gene) that affects the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells in the brain. The myelin is a protective sheath that acts in a manner very similar to that of the protective insulation that surrounds an electric wire; that is, it is necessary for the rapid transmission of electrical signals between neurons. This brain disorder is causes loss of brain functions and is progressive. There is no cure or treatment for this disorder. Leukodystrophy can be further categorised into 30-ish conditions, with Lily's specific condition believed to be 'aicardi goutieres syndrome'
On 21/11 Lily was surrounded by her direct family and baptised at the hospital, where I was lucky enough to become one of this beautiful girls God mothers.
Today, 23/11 Lily is having a skin and muscle biopsy, and lumbar puncture (spinal fluid test). Although none of this will be able to help her, hopefully it can help shed some light and possibly find a treatment for this disorder.
I'm not sure where this journey is headed, or when and how it will end but I'm going to be there every step of the way.
At this stage, if Lily doesn't improve, we will be looking at removing her breathing tube.
Mark and Sherene have endless love and support on their side, which has been shown by the countless well-wishes and prayers they have received for Lily. This is for the financial side to help them in anyway it can.
Lily had just turned 3 months old when she came down with a little bit of a cold and was a little wheezy so we were also thinking maybe it could be asthma. If only. She went to the doctors and was diagnosed with bronchiolitis, a common chest infection in young children.
Her breathing got worse and she was admitted to hospital on 9/11. Once there she was put on antibiotics for the bronchiolitis and her heart rate monitored as it was high. She had nose prongs in as they thought her lung had collapsed, these were to ensure she was getting enough oxygen and try to open up her lungs. She was placed in high care in the pediatrics ward.
On 10/11 Lily went into cardiac arrest and they performed CPR on her. She was transferred to the NICU so they could stabilise her before being flown to Sydney Children's Hospital at Randwick. Her heart rate was over 200 beats per minute and her lungs were struggling to breathe.
On 11/11, it was found that an infection caused by the bronchiolitis and another cold virus she was carrying had spread to her heart. They found that her heart was enlarged and she has been diagnosed with cardio myopathy- chronic disease of the heart muscle. Because of the pressure from her enlarged heart, she was struggling to breathe.
By this time Lily was fully sedated and her little body was being run by 11 medications and a number of machines including a breathing tube and a central line to her heart to control it from beating too fast. Her liver and kidneys weren't functioning properly as they took the hard hit from when she had cpr.
During all this doctors were concerned for Lily's brain and the effect the lack of oxygen could have caused. Because of the machines hooked up to her, they couldn't do an MRI.
On 15/11 Lily opened her eyes and although still heavily sedated was able to look around the room and at everyone who talked to her. Things were looking up as her kidney and liver functions were improving and her lungs were clearing. Her heart was the only concern at this point.
On 16/11 Lily had 8 seizures during the night, and the following night was a further 3. An MRI was ordered to be done ASAP.
On 19/11 Lily had her MRI. It was found that the lack of oxygen had not effected her brain, but they found that Lily was showing signs of a brain disorder called leukodystrophy.
Leukodystrphy Is a rare, usually genetic disorder (although can be caused by a mutated gene) that affects the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells in the brain. The myelin is a protective sheath that acts in a manner very similar to that of the protective insulation that surrounds an electric wire; that is, it is necessary for the rapid transmission of electrical signals between neurons. This brain disorder is causes loss of brain functions and is progressive. There is no cure or treatment for this disorder. Leukodystrophy can be further categorised into 30-ish conditions, with Lily's specific condition believed to be 'aicardi goutieres syndrome'
On 21/11 Lily was surrounded by her direct family and baptised at the hospital, where I was lucky enough to become one of this beautiful girls God mothers.
Today, 23/11 Lily is having a skin and muscle biopsy, and lumbar puncture (spinal fluid test). Although none of this will be able to help her, hopefully it can help shed some light and possibly find a treatment for this disorder.
I'm not sure where this journey is headed, or when and how it will end but I'm going to be there every step of the way.
At this stage, if Lily doesn't improve, we will be looking at removing her breathing tube.
Mark and Sherene have endless love and support on their side, which has been shown by the countless well-wishes and prayers they have received for Lily. This is for the financial side to help them in anyway it can.
Organizer
Alisa Haynes
Organizer
Ophir NSW
