Stormy's Garden ( Take 3)
Donation protected
As some of you will already know this is a very long and ongoing project to attempt to give our daughter the freedom she deserves. For those of you that don't know as much as others,our daughter Storm has a rare genetic malformation of the brain called Miller-Dieker Syndrome ( for more info on her condition please follow the link below).
https://ghr.nlm.nih.gov/condition/miller-dieker-syndrome
In short Storm has many challenges to face on a daily basis. Storm isn't entirely immobile but is unable to walk or stand up due to poor muscle development. She could be entered in the Guinness book of records as worlds fastest bum shuffler. She is able to communicate to a certain degree but only with sounds and pointing. She can not verbalise her needs as any other child could at her age. At diagnoses our consultant delivered the news that Storm was a miracle and was lucky to have survived pregnancy, we were told that Storm wouldn't unfortunately not live past her 7th birthday, she proved them all wrong with sheer determination to live and is currently a stroppy 13 years old. Storm also suffers with uncontrollably epilepsy which can result in multiple seizures daily and does mean we spend a large portion of our time at the hospital. Thanks to 'The Daisy Garland Charity' Storms seizures have dramatically decreased since she started the Modified Ketogentic Diet in 2015 ( Please visit you tube and watch 'Storms Story.' I've left a link for convenience below).
https://www.youtube.com/watch?v=k9fHAKZAIUU
However sadly, Storm does not have seizure freedom!
Some of you will remember we've been here before asking for help and we did really well with raising funds for the first stages of 'Project Stormy,' so here is what happened. Due to some really horrible luck with rogue builders and to be quite blunt horrible people ,that took advantage of our situation and also my poor health, they didn't quite do what they were asked. A/ We were charged ridiculous amounts of money for the small amount of work they were contracted to do. Slipped in extra costs etc. B/ Completely wrecked our existing garden and left us with a building site instead. The original aim was to finish this project last year to give Storm the freedom she deserves and has a right too instead of watching the world pass her by through the window every summer, year after year.
We have entered competition after competition, asked endless charities for help but it seems Storm's cause is always overlooked or as one charity described her 'Not a tangible project.' As a last hope I recently entered a competition in February with an all traders site to get the job done for free. Alas we didn't win.......... but we were graced with a lovely bunch of contractors and wonderful people that have gone out of their way to help us as much as possible to provide us with an amazing quote. These guys have literally begged, borrowed and swayed several different companies for materials and discounts in the grande scheme of giving Storm a garden she can literally lose herself in. I am referring to these guys as Storms fairy god parents right now because I honestly thought the nightmare wasn't going to end.
Obviously we have a little way to go but hopefully with everyone's help we could have Stormy running riot in her own sensory garden by as soon as the end of May'18!!
I would like to thank every one that helped with donations last time and also to N and G landscaping for trying to make Storm's dreams come true.
Thanks in advance for all donations I shall keep you all posted with our progress regularly as I can.
Thank you from the bottom of our hearts!
https://ghr.nlm.nih.gov/condition/miller-dieker-syndrome
In short Storm has many challenges to face on a daily basis. Storm isn't entirely immobile but is unable to walk or stand up due to poor muscle development. She could be entered in the Guinness book of records as worlds fastest bum shuffler. She is able to communicate to a certain degree but only with sounds and pointing. She can not verbalise her needs as any other child could at her age. At diagnoses our consultant delivered the news that Storm was a miracle and was lucky to have survived pregnancy, we were told that Storm wouldn't unfortunately not live past her 7th birthday, she proved them all wrong with sheer determination to live and is currently a stroppy 13 years old. Storm also suffers with uncontrollably epilepsy which can result in multiple seizures daily and does mean we spend a large portion of our time at the hospital. Thanks to 'The Daisy Garland Charity' Storms seizures have dramatically decreased since she started the Modified Ketogentic Diet in 2015 ( Please visit you tube and watch 'Storms Story.' I've left a link for convenience below).
https://www.youtube.com/watch?v=k9fHAKZAIUU
However sadly, Storm does not have seizure freedom!
Some of you will remember we've been here before asking for help and we did really well with raising funds for the first stages of 'Project Stormy,' so here is what happened. Due to some really horrible luck with rogue builders and to be quite blunt horrible people ,that took advantage of our situation and also my poor health, they didn't quite do what they were asked. A/ We were charged ridiculous amounts of money for the small amount of work they were contracted to do. Slipped in extra costs etc. B/ Completely wrecked our existing garden and left us with a building site instead. The original aim was to finish this project last year to give Storm the freedom she deserves and has a right too instead of watching the world pass her by through the window every summer, year after year.
We have entered competition after competition, asked endless charities for help but it seems Storm's cause is always overlooked or as one charity described her 'Not a tangible project.' As a last hope I recently entered a competition in February with an all traders site to get the job done for free. Alas we didn't win.......... but we were graced with a lovely bunch of contractors and wonderful people that have gone out of their way to help us as much as possible to provide us with an amazing quote. These guys have literally begged, borrowed and swayed several different companies for materials and discounts in the grande scheme of giving Storm a garden she can literally lose herself in. I am referring to these guys as Storms fairy god parents right now because I honestly thought the nightmare wasn't going to end.
Obviously we have a little way to go but hopefully with everyone's help we could have Stormy running riot in her own sensory garden by as soon as the end of May'18!!
I would like to thank every one that helped with donations last time and also to N and G landscaping for trying to make Storm's dreams come true.
Thanks in advance for all donations I shall keep you all posted with our progress regularly as I can.
Thank you from the bottom of our hearts!
Organizer
Seren Jay
Organizer
