- R
- K
On the 13th June 2019 I was blessed with a daughter who we named Hayaas Zahra. Bless her she was as big as the palm of my hand. As soon as she was born they rushed her to the NeoNatal unit as she was early by a few weeks.
After doing tests etc they treated her for Jaundice. on her 5th day her consultant called us to see him. My wife was still admitted in hospital because she was pretty bad after giving birth to my daughter.
When we went to see him that was when we was told that Hayaa has a rare Syndrome called Edwards Syndrome aka Partial Trisomy 18. This is where her chromosome 18 has extra material. Also she has no Corpus Callosum - that is a large, C-shaped nerve fiber bundle found beneath the cerebral cortex. It stretches across the midline of the brain, connecting the left and right cerebral hemispheres. It makes up the largest collection of white matter tissue found in the brain. This is why her head quite big for her age & struggles to hold her head up without support around her neck.
We was told she has no life expectancy. At this moment I cannot tell you how we were feeling. We was thinking all sorts. Thinking the worst of everything to be fair. She didn't not come home for the first 9/10 months of her life. Since she has been home we spend more time in hospital the we do at home - even now we're still doing the same.
In our home my front access is narrow as well my hallway. we struggle to get her wheelchair stroller in and out of the house. I have to more or less restructure the house in order to get her in & out with any issues. We need a wet room making on the ground floor so we can easily bathe her whilst she's downstairs. We need to rearrange a bedroom into storage so that her medical equipment for her daily use can be sorted in order. Last but not least we want to sort the garden out so its safe for to take her outside on a nice warm day so she too can enjoy her time outside with her elder brother & sister.
I have done more or less everything I possibly done for her every day to day living at home and out of home. I have contacted every possible professional individual for help for a few home improvements but I have been told that she is still young we can only provide help when she is older.
With her life expectancy i want everything to be bang on. As long as we have her for I want everything to be perfect. If we get this done as soon as possible I swear to god then we will be happy for the fact that she has everything we need to help her around the house and outside too.
Whoever I’ve spoke to over last 2 years I’ve not really achieved anything. All the way to the council I’ve been in touch with but feels like I’ve been thrown pillar to post.
Thank you in advance for reading this & contributing.
After doing tests etc they treated her for Jaundice. on her 5th day her consultant called us to see him. My wife was still admitted in hospital because she was pretty bad after giving birth to my daughter.
When we went to see him that was when we was told that Hayaa has a rare Syndrome called Edwards Syndrome aka Partial Trisomy 18. This is where her chromosome 18 has extra material. Also she has no Corpus Callosum - that is a large, C-shaped nerve fiber bundle found beneath the cerebral cortex. It stretches across the midline of the brain, connecting the left and right cerebral hemispheres. It makes up the largest collection of white matter tissue found in the brain. This is why her head quite big for her age & struggles to hold her head up without support around her neck.
We was told she has no life expectancy. At this moment I cannot tell you how we were feeling. We was thinking all sorts. Thinking the worst of everything to be fair. She didn't not come home for the first 9/10 months of her life. Since she has been home we spend more time in hospital the we do at home - even now we're still doing the same.
In our home my front access is narrow as well my hallway. we struggle to get her wheelchair stroller in and out of the house. I have to more or less restructure the house in order to get her in & out with any issues. We need a wet room making on the ground floor so we can easily bathe her whilst she's downstairs. We need to rearrange a bedroom into storage so that her medical equipment for her daily use can be sorted in order. Last but not least we want to sort the garden out so its safe for to take her outside on a nice warm day so she too can enjoy her time outside with her elder brother & sister.
I have done more or less everything I possibly done for her every day to day living at home and out of home. I have contacted every possible professional individual for help for a few home improvements but I have been told that she is still young we can only provide help when she is older.
With her life expectancy i want everything to be bang on. As long as we have her for I want everything to be perfect. If we get this done as soon as possible I swear to god then we will be happy for the fact that she has everything we need to help her around the house and outside too.
Whoever I’ve spoke to over last 2 years I’ve not really achieved anything. All the way to the council I’ve been in touch with but feels like I’ve been thrown pillar to post.
Thank you in advance for reading this & contributing.