Karlie's Journey
Donation protected
Hi guys:) so basically were fundraising to try and get my little girl karlie to America for the 2020 Holoprosencepaly conference.
A bit about karlie:
My daughter karlie was born at 38 weeks weighing 3lb10oz in craigavon area hospital. She was born with a frontal Enceplocele ( part of the brain protruding threw her skull with no flesh covering) at 3 days old karlie had an MRI scan on her brain which revealed not only that her frontal lobe was the part protruding from her skull but that she also had a rare brain malformation called Holoprosencepaly. There are different variants of Holoprosencepaly MIHV being the least severe and alobar being most severe. Our hearts broke when we discovered karlie had alobar Holoprosencepaly. Holoprosencepaly basically means her brain is missing her corpus callosom which means her entire brain is all one part, doctors described as looking like a huge cyst more so then a human brain. Missing corpus callosom also means her brain failed to devide into two separate hemispheres. Kids with Holoprosencepaly life expectancy doesn't give much hope and unfortunately many pass away within days of birth. It is thought to be life limiting which as a family is very frightening. So far as far as we are aware karlie is the only child in the UK with all her medical conditions as well as her Holoprosencepaly. Her other lists of conditions are 22q Deletion Syndrome, hemiplegia Cerebal Palsy, Enceplocele, Microcepaly and alobar Holoprosencepaly. Our wish to get over to the 2020 conference would give us the opportunity to meet other parents who's kids have Holoprosencepaly and similar other medical conditions and learn more about it to give karlie the best life by getting the best knowledge we can for her
A bit about karlie:
My daughter karlie was born at 38 weeks weighing 3lb10oz in craigavon area hospital. She was born with a frontal Enceplocele ( part of the brain protruding threw her skull with no flesh covering) at 3 days old karlie had an MRI scan on her brain which revealed not only that her frontal lobe was the part protruding from her skull but that she also had a rare brain malformation called Holoprosencepaly. There are different variants of Holoprosencepaly MIHV being the least severe and alobar being most severe. Our hearts broke when we discovered karlie had alobar Holoprosencepaly. Holoprosencepaly basically means her brain is missing her corpus callosom which means her entire brain is all one part, doctors described as looking like a huge cyst more so then a human brain. Missing corpus callosom also means her brain failed to devide into two separate hemispheres. Kids with Holoprosencepaly life expectancy doesn't give much hope and unfortunately many pass away within days of birth. It is thought to be life limiting which as a family is very frightening. So far as far as we are aware karlie is the only child in the UK with all her medical conditions as well as her Holoprosencepaly. Her other lists of conditions are 22q Deletion Syndrome, hemiplegia Cerebal Palsy, Enceplocele, Microcepaly and alobar Holoprosencepaly. Our wish to get over to the 2020 conference would give us the opportunity to meet other parents who's kids have Holoprosencepaly and similar other medical conditions and learn more about it to give karlie the best life by getting the best knowledge we can for her
Organizer and beneficiary
Gemma-Sarah McCusker
Organizer
Gemma McCusker
Beneficiary
