Seizure alarm for our bumble bee
Donation protected
Lucas story starts off very early age which as parents was heart breaking news ....
Lucas was a normal water delivery nothing seemed to go wrong and with being a first time mum this was the best time of my life i was only young just turned 18 3 months prio to giving birth to my lovely baby boy ironically all the way through the pregnancy he was called a little alien .
Few months past and things started not to add up he seemed to have a smaller head circumference to his percentiles also didnt seem to be reacting to any sudden movements or lights.
It was when it was firework night we decided to do something about this, lucas had stayed at his aunties and she even pulled us to one side to ask is he okay as he didnt seem to follow the candle on halloween nor look at the lights on bonfire night.
I contacted his peadiatrician who advised we went for a eye test which i had booked straight away.
Upon arriving it was the thought of is my baby boy not ever going to be able to see my face not ever going to know what his own mummy looks like ? Oh boy was i wrong that would have been a blessing ...
The optician called us in and everything seemed fine, he looked in his eyes and stopped not an expression on his face he asked us to give him a moment whilst he walked out the room, panic hit more like a ton of bricks falling from a great height.
He walked back in and explained his nerves in the back of his eyes were pale and they should be a deep red colour he started explaining more how this wasnt a job for him and he had booked us in for a brain scan few days later i took my baby to have a scan in a huge tube making horrible noises my poor baby didnt want to stay still so mummy climbed in to help and lay with him so he felt much safer finally success they got what they needed a few months past and things got harder the intesity of what is wrong with our baby finally we had the news to come in and see so we got all the family together for that day and went in you could tell it wasnt good news anyway we all sat down and the rest seemed such a blur like time had sped up and slowed down all at the same time .... Basically our boy has no brain he has the stem that comes from your neck up but no cortex (how he was living was a mystery) he passed funeral leaflets and explained we have roughly a month with him if not max will b 1 year bewildered we all went home feeling diffrent things some crying some numb it was from here on in it got worse my partner at the time struggled to cope with being a dad as it was never mind the disabilitys so our relationship got harder and harder until one day i walked in and found him hanging lucas was left with out his dad because he was disabled it wasnt a good time .
Social services got involved and lucas had to go to his aunties for a while as they deemed me as his mum mentally unstable because of what had happened when in fact that was beyond the truth i needed my boy and after a few months of fighting to prove this i finally had him back i met a new partner who took me on despite everything i had going on he came to social services meetings and helped me change my mind set as i always cried every night at lucas in his cot but this guy helped me realise i can mourn him when he passes i should be celebrating his life thats when things picked up even more we moved out of the flat lucass dad had hung himself in and we made a new home making sure lucas was the heart and soul of it all still with social in the background and as years passed lucas became 3 years old and by law he had to start school at this process we found we was pregnant so we had to think about a new home with an extra bedroom my partners dad had passed away before i met him but now his mum was ill lay in her hospital bed for months dying slowly we was so confused we had school saying if lucas didnt go in we would be in trouble my partners mum was dying and i was 6 months pregnant lucas started school and i gave birth to another baby boy who due to lucass condition i really wanted to breast feed so he had all the right nutrients this drained me amongst life, social services and school lucas had always fed in my arms and now after 3 years of being in a pram and eating in my arms they strap him into a wheelchair and expect him to eat becaue they by law wasnt aloud to handle him they started to determine he couldnt eat i always attended hospital app but because i wouldnt let people in my home whilst i was breast feeding they contacted the hospital and social services and we had to take him in this is when they started messing with my boy they shoved a tube down his nose into his belly to feed him pure specialized milk he did not like this and kept throwing up non stop he kept loosing more and more weight and i got concerned fighting the system was not easy they did not listen in the meantime my partners mum passed and we had to move into his home so he wouldnt loose it i gave up my keys and we moved in starting another new life fee months after being in and out of hospital with this tube and his severe vomiting he deteriorated ending up in alderhey hospital for 2 years of his life social blamed us and said we wasnt accepting his disability and that he was finally struggling to survive with his lack of brain to help him breathe and eat which are very day essentials of living. Every moment was a fight but one worth fighting for our son he was close to deaths door a few times we have taken pictures of the good and bad times of lucass life now lucas has a tracheostomy in his neck to help him breathe he requires oxygen at night as his brain forgets to tell him to breathe he is also now fed via a peg jej after a long trial of the nj tube down his nose and peg these things didnt work for lucas and as he is getting older and his organs are shutting bit by bit we are experincing complications with now his peg jej which may lead to more operations next year lucas has to have a life or limb operation for his hip due to this being dislocated severly for 3 years now lucas suffers from seizures terrible ones ranging from mild to severe due to his trachy some of these can be quiet and go easily unnoticed if he wasnt watched by us and has done since everything changed so cannot enjoy the small things in life he used to We fought for adaptions as chester hospital said he was not aloud to be realesed home without these due to his change of circumstances when he first arrived at hospital yet they was letting him go school and straight back to hospital we had done all that was asked of us and yet never seemed enough we had to get solicitor involved and contact the mp and throw human rights against them which finally got him home.
We are parents who now watch him 24/7 all night and day when hes not in school however theres only one reason for this ! Thats because we have to watch for seizures due to his lack of brain theres no alarm the nhs can give us for this so me and my partner take turns watching him throughout the night then have busy days with our other children so no time to sleep. With this alarm we will be notified when he is having any type of seizure and able to get to his aide right away without having to watch a sleeping boy all the time. We are the happiest parents ever to have him home with us and would never risk loosing him quicker to a seizure however with his lack of brain this will happen regardless and every day is a blessing with our bumble bee
Thank you for reading our story
Lucas was a normal water delivery nothing seemed to go wrong and with being a first time mum this was the best time of my life i was only young just turned 18 3 months prio to giving birth to my lovely baby boy ironically all the way through the pregnancy he was called a little alien .
Few months past and things started not to add up he seemed to have a smaller head circumference to his percentiles also didnt seem to be reacting to any sudden movements or lights.
It was when it was firework night we decided to do something about this, lucas had stayed at his aunties and she even pulled us to one side to ask is he okay as he didnt seem to follow the candle on halloween nor look at the lights on bonfire night.
I contacted his peadiatrician who advised we went for a eye test which i had booked straight away.
Upon arriving it was the thought of is my baby boy not ever going to be able to see my face not ever going to know what his own mummy looks like ? Oh boy was i wrong that would have been a blessing ...
The optician called us in and everything seemed fine, he looked in his eyes and stopped not an expression on his face he asked us to give him a moment whilst he walked out the room, panic hit more like a ton of bricks falling from a great height.
He walked back in and explained his nerves in the back of his eyes were pale and they should be a deep red colour he started explaining more how this wasnt a job for him and he had booked us in for a brain scan few days later i took my baby to have a scan in a huge tube making horrible noises my poor baby didnt want to stay still so mummy climbed in to help and lay with him so he felt much safer finally success they got what they needed a few months past and things got harder the intesity of what is wrong with our baby finally we had the news to come in and see so we got all the family together for that day and went in you could tell it wasnt good news anyway we all sat down and the rest seemed such a blur like time had sped up and slowed down all at the same time .... Basically our boy has no brain he has the stem that comes from your neck up but no cortex (how he was living was a mystery) he passed funeral leaflets and explained we have roughly a month with him if not max will b 1 year bewildered we all went home feeling diffrent things some crying some numb it was from here on in it got worse my partner at the time struggled to cope with being a dad as it was never mind the disabilitys so our relationship got harder and harder until one day i walked in and found him hanging lucas was left with out his dad because he was disabled it wasnt a good time .
Social services got involved and lucas had to go to his aunties for a while as they deemed me as his mum mentally unstable because of what had happened when in fact that was beyond the truth i needed my boy and after a few months of fighting to prove this i finally had him back i met a new partner who took me on despite everything i had going on he came to social services meetings and helped me change my mind set as i always cried every night at lucas in his cot but this guy helped me realise i can mourn him when he passes i should be celebrating his life thats when things picked up even more we moved out of the flat lucass dad had hung himself in and we made a new home making sure lucas was the heart and soul of it all still with social in the background and as years passed lucas became 3 years old and by law he had to start school at this process we found we was pregnant so we had to think about a new home with an extra bedroom my partners dad had passed away before i met him but now his mum was ill lay in her hospital bed for months dying slowly we was so confused we had school saying if lucas didnt go in we would be in trouble my partners mum was dying and i was 6 months pregnant lucas started school and i gave birth to another baby boy who due to lucass condition i really wanted to breast feed so he had all the right nutrients this drained me amongst life, social services and school lucas had always fed in my arms and now after 3 years of being in a pram and eating in my arms they strap him into a wheelchair and expect him to eat becaue they by law wasnt aloud to handle him they started to determine he couldnt eat i always attended hospital app but because i wouldnt let people in my home whilst i was breast feeding they contacted the hospital and social services and we had to take him in this is when they started messing with my boy they shoved a tube down his nose into his belly to feed him pure specialized milk he did not like this and kept throwing up non stop he kept loosing more and more weight and i got concerned fighting the system was not easy they did not listen in the meantime my partners mum passed and we had to move into his home so he wouldnt loose it i gave up my keys and we moved in starting another new life fee months after being in and out of hospital with this tube and his severe vomiting he deteriorated ending up in alderhey hospital for 2 years of his life social blamed us and said we wasnt accepting his disability and that he was finally struggling to survive with his lack of brain to help him breathe and eat which are very day essentials of living. Every moment was a fight but one worth fighting for our son he was close to deaths door a few times we have taken pictures of the good and bad times of lucass life now lucas has a tracheostomy in his neck to help him breathe he requires oxygen at night as his brain forgets to tell him to breathe he is also now fed via a peg jej after a long trial of the nj tube down his nose and peg these things didnt work for lucas and as he is getting older and his organs are shutting bit by bit we are experincing complications with now his peg jej which may lead to more operations next year lucas has to have a life or limb operation for his hip due to this being dislocated severly for 3 years now lucas suffers from seizures terrible ones ranging from mild to severe due to his trachy some of these can be quiet and go easily unnoticed if he wasnt watched by us and has done since everything changed so cannot enjoy the small things in life he used to We fought for adaptions as chester hospital said he was not aloud to be realesed home without these due to his change of circumstances when he first arrived at hospital yet they was letting him go school and straight back to hospital we had done all that was asked of us and yet never seemed enough we had to get solicitor involved and contact the mp and throw human rights against them which finally got him home.
We are parents who now watch him 24/7 all night and day when hes not in school however theres only one reason for this ! Thats because we have to watch for seizures due to his lack of brain theres no alarm the nhs can give us for this so me and my partner take turns watching him throughout the night then have busy days with our other children so no time to sleep. With this alarm we will be notified when he is having any type of seizure and able to get to his aide right away without having to watch a sleeping boy all the time. We are the happiest parents ever to have him home with us and would never risk loosing him quicker to a seizure however with his lack of brain this will happen regardless and every day is a blessing with our bumble bee
Thank you for reading our story
Organizer
Tom Jones
Organizer
England
