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Our precious Islah was born a healthy 9pound 11oz on the 3rd of March 2014. Such a beautiful little baby girl who stole the hearts immediately of her mum, dad and her 3 year old big sister. At 6 months of age we noticed that Islah wasn't progressing with her development, she appeared to be slowing down in all areas and becoming very weak. She was no longer able to sit or hold and grasp anything and we noticed the increasing need to provide extra support while holding her. She was becoming sensitive to loud noises and would always be left startled.
We spent endless hours at the hospital meeting with a variety of specialists, explaining our observations and hoping they knew what was happening and how to help Islah. She was so brave while undergoing many different tests and exams, sometimes more than once. When we finally received Islah's diagnosis our whole entire world came crashing down.
On the 27th of May 2015 the specialist confirmed our baby girl was suffering from Tay-Sachs Disease. This cruel disease is a fatal genetic disorder that results in progressive destruction of the nervous system.
There is no cure or treatment available.
As the disease progresses it takes away the child's vision and hearing, effects their ability to eat and swallow effectively and safely, they experience recurring seizures, suffer from intellectual disability and paralysis and devastatingly pass away between the ages of 2-5.
Our wish now for Islah is to feel happiness and love every single day of her life by everyone that surrounds her. To experience as much of life as she can. Ensuring she is kept comfortable is a major priority and she requires so much more extra care to ensure even the daily requirements of living are met and these needs are only going to increase.
We want to make every minute count and every memory as precious as the one of the day she was born.
Being only 1 of 2 babies living in Australia suffering from Tay-Sachs we would love nothing more than for Islah's sparkle to be spread as far and as wide as possible. To help bring awareness to the multilevel of destruction this disease brings to the children suffering, their families and community. Testing for Tay-Sachs is as simple as a blood test or a cheek swab. Carriers of the genetic mutation don't exhibit symptoms, it's only when both parents carry the mutated gene that the chance of the baby being born with the disease is 25%. This can be avoided with simple testing. Please support Islah, help us love on her and help us make every minute with her a memory.
Thank you for taking the time to read about Islah and Tay-Sachs, we would love for you to visit and like our Facebook page dedicated to celebrating our baby girls life and helping to spread awareness of Tay-Sachs.
https://www.facebook.com/IslahsSparkle
We spent endless hours at the hospital meeting with a variety of specialists, explaining our observations and hoping they knew what was happening and how to help Islah. She was so brave while undergoing many different tests and exams, sometimes more than once. When we finally received Islah's diagnosis our whole entire world came crashing down.
On the 27th of May 2015 the specialist confirmed our baby girl was suffering from Tay-Sachs Disease. This cruel disease is a fatal genetic disorder that results in progressive destruction of the nervous system.
There is no cure or treatment available.
As the disease progresses it takes away the child's vision and hearing, effects their ability to eat and swallow effectively and safely, they experience recurring seizures, suffer from intellectual disability and paralysis and devastatingly pass away between the ages of 2-5.
Our wish now for Islah is to feel happiness and love every single day of her life by everyone that surrounds her. To experience as much of life as she can. Ensuring she is kept comfortable is a major priority and she requires so much more extra care to ensure even the daily requirements of living are met and these needs are only going to increase.
We want to make every minute count and every memory as precious as the one of the day she was born.
Being only 1 of 2 babies living in Australia suffering from Tay-Sachs we would love nothing more than for Islah's sparkle to be spread as far and as wide as possible. To help bring awareness to the multilevel of destruction this disease brings to the children suffering, their families and community. Testing for Tay-Sachs is as simple as a blood test or a cheek swab. Carriers of the genetic mutation don't exhibit symptoms, it's only when both parents carry the mutated gene that the chance of the baby being born with the disease is 25%. This can be avoided with simple testing. Please support Islah, help us love on her and help us make every minute with her a memory.
Thank you for taking the time to read about Islah and Tay-Sachs, we would love for you to visit and like our Facebook page dedicated to celebrating our baby girls life and helping to spread awareness of Tay-Sachs.
https://www.facebook.com/IslahsSparkle