Charlie Ellis
Rayah,s Story
Fundraising for Joseph's Goal
Story
We are wanting to raise money to send to the research of a rare condition that is taking the lives of our precious children.
NKH- Nonketotic hyperglycinemia.
Here is our story of our precious baby girl.
Rayah was born at 29weeks 5days gestation at 7:22am weighing 932grams by emergency c-section. After been admitted to hospital for reduced blood flow. We was told that we had a long road ahead of us which we knew has she was born 11 weeks early.
Before she was born we had a few trips to the hospital for reduced movements after 2 visits and told we needed a scan. On the Friday 13th January we went for the scan and was admitted with the reduced blood flow. After spending Friday and Saturday night on monitors due to little princesses heartbeat dipping they discussed me being in hospital until she was born. Well Sunday night came and they didn't monitor me which I thought wasn't right. Monday morning came and the midwife that came in at half 6 was very shocked that I hadn't been on the monitor overnight. She put me straight on monitors and that's when rayah's heartbeat dipped down to 54 so she went to get a doctor when she returned she was followed by my consultant. He checked the print out of the monitor and said to me that they was taking me to the labour ward, while they was speaking to me I was on the phone to my husband telling him to come to the hospital. Just has the consultant was walking out of the room rayah's heartbeat dipped down to 30 and within seconds I was on my way to theatre. I arrived in theatre at 7:14am and she was born at 7:22am. Shocked was an understatement. I was wheeled out of theatre and my husband had just arrived.
In the first 24 hours of being born Rayah was breathing in her own with a little help from cpap. But then she started to struggle breathing so she was then ventilated. She began to become very lethargic and didn't have any muscle tone which her doctors wasn't happy about. They started to do test after test on our baby girl. Before they started any tests they had mentioned NKH which we had never heard of. NKH is a condition that causes brain damage and seizures which are uncontrollable. NKH is a build up of glycine in the fluid of the brain and spinal code which isn't broke down by the amino acids. If they had known that Rayah had this condition before or in the first 24 hours, then they could of give her a supplement of amino acids to prolong her life and give her a better start in life but this wasn't the case. Rayah's consultant then had to preform 3 lumber punctures on Rayah which she didn't react to which normal babies fight against, these 3 tests didn't show anything they was hoping for so they then had to preform another lumber punctures which was in the soft spot on her head which again she didn't react to.
We was then taken to a room with her consultant and was told that the condition was severe and Walmart the outcome would be. We couldn't see our precious baby girl in pain or suffer in any way.
Me and her daddy went away with this information and we made the hardest decision of our life's and that was to make her time comfortable has possible and enjoy the little time we had with her.
At the age of just 2 weeks we made the decision to turn her life support off. The hardest day of our life's.
We miss her everyday and just wish her back.
We now have the results back from our tests and this has confirmed that we have a 1 in 4 chance of this happening again, we are both carriers of this condition.
We need your help to raise has much has possible has the NKH families have 2 doctors that are researching this condition to hopefully find cure for this condition but funds stand in the way of the cure being found.
Please help has much has possible.
Thanks for reading our story of our little beautiful baby angel.
NKH- Nonketotic hyperglycinemia.
Here is our story of our precious baby girl.
Rayah was born at 29weeks 5days gestation at 7:22am weighing 932grams by emergency c-section. After been admitted to hospital for reduced blood flow. We was told that we had a long road ahead of us which we knew has she was born 11 weeks early.
Before she was born we had a few trips to the hospital for reduced movements after 2 visits and told we needed a scan. On the Friday 13th January we went for the scan and was admitted with the reduced blood flow. After spending Friday and Saturday night on monitors due to little princesses heartbeat dipping they discussed me being in hospital until she was born. Well Sunday night came and they didn't monitor me which I thought wasn't right. Monday morning came and the midwife that came in at half 6 was very shocked that I hadn't been on the monitor overnight. She put me straight on monitors and that's when rayah's heartbeat dipped down to 54 so she went to get a doctor when she returned she was followed by my consultant. He checked the print out of the monitor and said to me that they was taking me to the labour ward, while they was speaking to me I was on the phone to my husband telling him to come to the hospital. Just has the consultant was walking out of the room rayah's heartbeat dipped down to 30 and within seconds I was on my way to theatre. I arrived in theatre at 7:14am and she was born at 7:22am. Shocked was an understatement. I was wheeled out of theatre and my husband had just arrived.
In the first 24 hours of being born Rayah was breathing in her own with a little help from cpap. But then she started to struggle breathing so she was then ventilated. She began to become very lethargic and didn't have any muscle tone which her doctors wasn't happy about. They started to do test after test on our baby girl. Before they started any tests they had mentioned NKH which we had never heard of. NKH is a condition that causes brain damage and seizures which are uncontrollable. NKH is a build up of glycine in the fluid of the brain and spinal code which isn't broke down by the amino acids. If they had known that Rayah had this condition before or in the first 24 hours, then they could of give her a supplement of amino acids to prolong her life and give her a better start in life but this wasn't the case. Rayah's consultant then had to preform 3 lumber punctures on Rayah which she didn't react to which normal babies fight against, these 3 tests didn't show anything they was hoping for so they then had to preform another lumber punctures which was in the soft spot on her head which again she didn't react to.
We was then taken to a room with her consultant and was told that the condition was severe and Walmart the outcome would be. We couldn't see our precious baby girl in pain or suffer in any way.
Me and her daddy went away with this information and we made the hardest decision of our life's and that was to make her time comfortable has possible and enjoy the little time we had with her.
At the age of just 2 weeks we made the decision to turn her life support off. The hardest day of our life's.
We miss her everyday and just wish her back.
We now have the results back from our tests and this has confirmed that we have a 1 in 4 chance of this happening again, we are both carriers of this condition.
We need your help to raise has much has possible has the NKH families have 2 doctors that are researching this condition to hopefully find cure for this condition but funds stand in the way of the cure being found.
Please help has much has possible.
Thanks for reading our story of our little beautiful baby angel.