My sisters family left with nothing
Donation protected
My name is Kirsty and i have created this page to help my sister and her family.
On the 8th July 2015 my beautiful Niece, Jessica-Lily devastatingly passed away at 5 years old.
For all of her life she had suffered from severe Epilepsy, Chronic Lung Disease and severe Global Developmental Delay.
Jessica, throughout her life was never able to walk, speak, was tube fed and could barely move.She was a limited life child, and on 4 occasions we almost lost her.
Understandably, my sister and her partner went through the most horrendous stress, both being her full time critical carers and doing an amazing job! Alongside, raising their now 3 year old son.
On the day Jessica passed away their main source of income immediately stopped, leaving them with not enough money to keep their family home. They now have no choice but to actively seek work with no time to grieve after both parents cared for their daughter for 5 1/2 years and were practically house bound.
My sister posted this status this morning on Facebook and I would like to share with you a small insight into the struggles they had and are currently going through.
Feeling emotional and anxious today. Not having our Jessica here to care for just isn't right and I can't get my head around it atall. But now we have the huge worry of keeping the roof over our head. On the day of her death our main payment stopped and we are left to struggle trying to find our rent. We have no bereavement payment to receive, nothing! If you lose your husband or wife you are entitled to receive some sort of bereavement payment, but if you lose a child you get nothing. We have about 4 weeks left before we have to start looking for a job and begin the "signing on" Personally, I think this is unthinkable. Me and James haven't worked for almost 6 years, both being critical carers for Jessica and trying to give Jimi a good life at the same time. You don't get any extra money if the care involved needs 2 people but because she was so hands on we just couldn't have managed her safely with just one of us. I can't believe we are now having to panic about how we're going to pay next months rent when we haven't even had time to accept she is gone. She hadn't been to hospital for years because she always got worse there and always improved at home so we saw to her every need. The seizures, the choking, the infections, the oxygen, the tube feeds,seeing her going blue so many times and bringing her back, the bed sores, the meds, the alarms going off night and day with me and James jumping into action, being told on 4 occasions she wasn't going to survive the night and having to deal with just waiting for it to happen. Are we expected to get back into normal life that we haven't known for nearly 6 years, immediately?! Before Jimi was born we spent 2 years at home with her and didn't take any respite, no help from anyone we saw to her ourselves and didn't leave the house. We wouldn't change anything and the nurses have always said if we weren't so in tune with our angel she wouldn't have gotten this far. On the day she left us James and I fought and fought to keep her, we gave her bag and mask, mouth to mouth, intrusive suction, everything, we so desperately wanted her to stay but it was her time and we had to watch her slip away and there was nothing we could do to help her anymore. I can't believe it has happened. I will never get to hold her tiny hand or stroke her petal soft face. She has changed us as people and our lives have been turned upside down and inside out, the things we have seen are from nightmares and the pain we have suffered from watching her suffer has been unbearable. I'm sorry if this post upsets anyone, that's not my intention I just feel extremely let down and wanted people to know the reality of what it has been like for us. We would never have had her any different, she was the sun in our sky and she took our breath away just by looking at her, but how can we carry on with normal life so soon after losing someone so precious and life changing?
If you feel you would like to help my sister and her family it would mean so much.
I just would like them to have a few months grace of worrying about bills until they can face the real world again and start working as normal families do.
There has never been a more deserving family.
Thankyou for taking the time to read this page
From Jessica's Auntie Kirsty xxx
On the 8th July 2015 my beautiful Niece, Jessica-Lily devastatingly passed away at 5 years old.
For all of her life she had suffered from severe Epilepsy, Chronic Lung Disease and severe Global Developmental Delay.
Jessica, throughout her life was never able to walk, speak, was tube fed and could barely move.She was a limited life child, and on 4 occasions we almost lost her.
Understandably, my sister and her partner went through the most horrendous stress, both being her full time critical carers and doing an amazing job! Alongside, raising their now 3 year old son.
On the day Jessica passed away their main source of income immediately stopped, leaving them with not enough money to keep their family home. They now have no choice but to actively seek work with no time to grieve after both parents cared for their daughter for 5 1/2 years and were practically house bound.
My sister posted this status this morning on Facebook and I would like to share with you a small insight into the struggles they had and are currently going through.
Feeling emotional and anxious today. Not having our Jessica here to care for just isn't right and I can't get my head around it atall. But now we have the huge worry of keeping the roof over our head. On the day of her death our main payment stopped and we are left to struggle trying to find our rent. We have no bereavement payment to receive, nothing! If you lose your husband or wife you are entitled to receive some sort of bereavement payment, but if you lose a child you get nothing. We have about 4 weeks left before we have to start looking for a job and begin the "signing on" Personally, I think this is unthinkable. Me and James haven't worked for almost 6 years, both being critical carers for Jessica and trying to give Jimi a good life at the same time. You don't get any extra money if the care involved needs 2 people but because she was so hands on we just couldn't have managed her safely with just one of us. I can't believe we are now having to panic about how we're going to pay next months rent when we haven't even had time to accept she is gone. She hadn't been to hospital for years because she always got worse there and always improved at home so we saw to her every need. The seizures, the choking, the infections, the oxygen, the tube feeds,seeing her going blue so many times and bringing her back, the bed sores, the meds, the alarms going off night and day with me and James jumping into action, being told on 4 occasions she wasn't going to survive the night and having to deal with just waiting for it to happen. Are we expected to get back into normal life that we haven't known for nearly 6 years, immediately?! Before Jimi was born we spent 2 years at home with her and didn't take any respite, no help from anyone we saw to her ourselves and didn't leave the house. We wouldn't change anything and the nurses have always said if we weren't so in tune with our angel she wouldn't have gotten this far. On the day she left us James and I fought and fought to keep her, we gave her bag and mask, mouth to mouth, intrusive suction, everything, we so desperately wanted her to stay but it was her time and we had to watch her slip away and there was nothing we could do to help her anymore. I can't believe it has happened. I will never get to hold her tiny hand or stroke her petal soft face. She has changed us as people and our lives have been turned upside down and inside out, the things we have seen are from nightmares and the pain we have suffered from watching her suffer has been unbearable. I'm sorry if this post upsets anyone, that's not my intention I just feel extremely let down and wanted people to know the reality of what it has been like for us. We would never have had her any different, she was the sun in our sky and she took our breath away just by looking at her, but how can we carry on with normal life so soon after losing someone so precious and life changing?
If you feel you would like to help my sister and her family it would mean so much.
I just would like them to have a few months grace of worrying about bills until they can face the real world again and start working as normal families do.
There has never been a more deserving family.
Thankyou for taking the time to read this page
From Jessica's Auntie Kirsty xxx
Organizer
Kirsty Luntley
Organizer
