Harrys Angels
Im hoping to appeal to friends old and new and those kind strangers who just want to contribute to show that although the world can be a cruel place there are those of us who would do anything no matter how small it may seem to help a family in need. You see a while back a good school friend of mine knocked on my door out of the blue to tell me something in person. Before I tell you what that 'something' was i would like to elaborate on her life before that. Cherylyn is one of those friends that you know are a true friend, you don't need to see them month after month but you know they are there and friendship picks right back up where it left off. Years ago a year after i had my daughter, Cherylyn had a baby boy called Callum, he never came home from hospital and he lived a few short weeks after medical negligence robbed him of his chance to grow. Despite being a young mum with support from her close family she battled on and carried on. Babies were not to be for many reasons, some of them sad having lost single babies with miscarriages, and twins lost in miscarriage too. Still determined and strong she carried on working and not dwelling on the past. In her 30's she met her partner and went on to have a healthy baby boy called Leo, now 5 years old. In quick succession another baby boy called Max who is now 4 brought a joy that only children bring. Life was hectic as it would be with 2 babies born so near to each other but life was good. Cherylyns family was complete until an unexpected positive pregnancy test and then the news that twins would arrive sometime in September, a double whammy a boy and girl! Pregnancy was hard and not without problems with the twins Ruby and Harry being born premature on 16/08/2015. Again there wasn't anything that Cherylyn didn't deal with and with 4 children life was busy to say the least but after maternity Cher went back to working in care working night shifts to fit around her young family.
Back to the night when something changed. You see little Harry had been having seizures, seizures so bad he was in and out of hospital lots. Seizures that resulted in him having to be resucitated by his mum on more than the one occasion. Harry was diagnosed with Dravet Syndrome which is a catastrophic epilepsy that begins in infancy. Children typically experience uncontrollable seizures, behavioural and development delays, delayed language and speech issues to name but a few. They also have an increased risk of SUDEP (Sudden Unexplained Death in Epilepsy). I had never heard of it and I'm sure alot of people are unaware of its existence. Children diagnosed generally have a poor prognosis.
As a mother imagine trying to sleep knowing that at anytime a seizure will happen, imagine trying not to get your little boy excited too much incase it brings on a seizure , now imagine being those other 3 little children all so young trying to understand mummy is busy trying to keep a calm household, a household where you can have fun and not constantly be worrying about the what ifs. Little Harry had been in and out of hospital for more times in his little life than many in their lifetime. His little shins had injections straight into his bone marrow as part of the treatment and it could be a seizure one day and back to his 'normal' happy self the next. Medication was in form of multiple syringes and there were lots of them per day. As you can imagine life would be tough for any family, any mum and Cher gave up work to concentrate on her young family knowing that everyday is a blessing and every day a seizure could hit, and the familiar creak of the hospital bed would be somewhere Cherylyn would spend another night.
On Sunday 27th May 2018 little Harry couldn't fight on and a simple message from his mum choked me my message inbox read simply 'Harry died this morning x'. I cannot even fathom the pain they must be feeling and cannot express how saddened i am that this has happened. We are all touched by devoting parents and as parents ourselves we know we cannot take that hurt away, how can the adults explain to the 3 angels left behind that Harry is with the moon and the stars (words of their nanny Moe's Facebook status). Please help me be able to gift them with a trip to Euro Disney to watch the shows light up the Magical Kingdoms Castle to get Mickey and Minnie to sign their autograph books, to giggle as they drip the red sauce from their hotdogs and gaze and go wow as the fireworks explode as the park shuts, exploding into a million brilliant beaming shards of light into a night sky where their brother Harry will be gazing down with his cheeky grin from the magical moonbeam.
Myself and my husband will be running a half marathon in his memory in Swansea and i have been asking friends for fundraising ideas as we all pull together please please help lets show these young children that magic does still exist x
Im hoping to appeal to friends old and new and those kind strangers who just want to contribute to show that although the world can be a cruel place there are those of us who would do anything no matter how small it may seem to help a family in need. You see a while back a good school friend of mine knocked on my door out of the blue to tell me something in person. Before I tell you what that 'something' was i would like to elaborate on her life before that. Cherylyn is one of those friends that you know are a true friend, you don't need to see them month after month but you know they are there and friendship picks right back up where it left off. Years ago a year after i had my daughter, Cherylyn had a baby boy called Callum, he never came home from hospital and he lived a few short weeks after medical negligence robbed him of his chance to grow. Despite being a young mum with support from her close family she battled on and carried on. Babies were not to be for many reasons, some of them sad having lost single babies with miscarriages, and twins lost in miscarriage too. Still determined and strong she carried on working and not dwelling on the past. In her 30's she met her partner and went on to have a healthy baby boy called Leo, now 5 years old. In quick succession another baby boy called Max who is now 4 brought a joy that only children bring. Life was hectic as it would be with 2 babies born so near to each other but life was good. Cherylyns family was complete until an unexpected positive pregnancy test and then the news that twins would arrive sometime in September, a double whammy a boy and girl! Pregnancy was hard and not without problems with the twins Ruby and Harry being born premature on 16/08/2015. Again there wasn't anything that Cherylyn didn't deal with and with 4 children life was busy to say the least but after maternity Cher went back to working in care working night shifts to fit around her young family.
Back to the night when something changed. You see little Harry had been having seizures, seizures so bad he was in and out of hospital lots. Seizures that resulted in him having to be resucitated by his mum on more than the one occasion. Harry was diagnosed with Dravet Syndrome which is a catastrophic epilepsy that begins in infancy. Children typically experience uncontrollable seizures, behavioural and development delays, delayed language and speech issues to name but a few. They also have an increased risk of SUDEP (Sudden Unexplained Death in Epilepsy). I had never heard of it and I'm sure alot of people are unaware of its existence. Children diagnosed generally have a poor prognosis.
As a mother imagine trying to sleep knowing that at anytime a seizure will happen, imagine trying not to get your little boy excited too much incase it brings on a seizure , now imagine being those other 3 little children all so young trying to understand mummy is busy trying to keep a calm household, a household where you can have fun and not constantly be worrying about the what ifs. Little Harry had been in and out of hospital for more times in his little life than many in their lifetime. His little shins had injections straight into his bone marrow as part of the treatment and it could be a seizure one day and back to his 'normal' happy self the next. Medication was in form of multiple syringes and there were lots of them per day. As you can imagine life would be tough for any family, any mum and Cher gave up work to concentrate on her young family knowing that everyday is a blessing and every day a seizure could hit, and the familiar creak of the hospital bed would be somewhere Cherylyn would spend another night.
On Sunday 27th May 2018 little Harry couldn't fight on and a simple message from his mum choked me my message inbox read simply 'Harry died this morning x'. I cannot even fathom the pain they must be feeling and cannot express how saddened i am that this has happened. We are all touched by devoting parents and as parents ourselves we know we cannot take that hurt away, how can the adults explain to the 3 angels left behind that Harry is with the moon and the stars (words of their nanny Moe's Facebook status). Please help me be able to gift them with a trip to Euro Disney to watch the shows light up the Magical Kingdoms Castle to get Mickey and Minnie to sign their autograph books, to giggle as they drip the red sauce from their hotdogs and gaze and go wow as the fireworks explode as the park shuts, exploding into a million brilliant beaming shards of light into a night sky where their brother Harry will be gazing down with his cheeky grin from the magical moonbeam.
Myself and my husband will be running a half marathon in his memory in Swansea and i have been asking friends for fundraising ideas as we all pull together please please help lets show these young children that magic does still exist x