My Hope for Summer
Donation protected
Hello,
My name is Stacey, I am the first cousin of a beautiful spirit so appropriately named Summer. She is the gentlest, most caring, generous person you could ever hope to meet, but she is very ill and has been for a long time. Actually, more than ill, she is also loosing her battle with a rare condition known as CRPS/RDS (Complex Regional Pain Syndrome/Reflex Sympathetic Dis trophy) at the young age of 38 . This rare, take no prisoners, degenerative condition attacks the nervous system first and then can move to the major organs. There is no cure. It is so rare that there is very little research being done for this orphan disease, and few physicians are familiar with it and/or have treated it and understand it.
It typically begins in an isolated area following a trauma to soft tissue and then can spread through the entire body (not always, but unfortunately it has in Summer's case). She sprained her ankle, such a common occurrence, harmless for most, but for her it was the beginning of a 10 year battle with a condition that has reduced her life to one spent mostly in bed, as movement causes severe pain and often sends her into seizures.
There are far too many aspects of this monstrous condition for me to go into in detail. The long and the short of it is that Summer has been told to "go home and do the best she can" and she has, as best she can. She spends much of her awake time researching what is know about the condition and helping to educate others, even running a Facebook group to support others suffering with this condition, others who feel as isolated as she does.
Do not misunderstand, there is no room for self pity in her life. She is an absolute warrior, my super hero who humbles me constantly but she is human and it has been difficult for her to cling to hope when you know there is no help coming. As someones who loves her very much I have been witness to her painful demise, feeling completely useless and helpless and now heartbroken as she has been instructed by her doctor that any options may make things worse. There is nothing that can be done and her condition has deteriorated to the point of no return, she is now getting her affairs in order.
So here I stand, seeking your help to find a way to make one of her "bucket list" wishes come true, to create a special memory for her while there is still a slim chance for her to do it. With your help, I hope to send her to Toronto for the weekend to visit the Ripley's Aquarium, that is her wish. This will be an enormous undertaking for her but I am hoping it will give her something to fight for. I know, at the very least it will touch her soul deeply to know that people care enough to help her achieve it. Even if you personally can't help financially, sharing this fundraiser with your tribe would help enormously and I would be eternally grateful and in your debt.
Thank you from the bottom of my heart,
Stacey
My name is Stacey, I am the first cousin of a beautiful spirit so appropriately named Summer. She is the gentlest, most caring, generous person you could ever hope to meet, but she is very ill and has been for a long time. Actually, more than ill, she is also loosing her battle with a rare condition known as CRPS/RDS (Complex Regional Pain Syndrome/Reflex Sympathetic Dis trophy) at the young age of 38 . This rare, take no prisoners, degenerative condition attacks the nervous system first and then can move to the major organs. There is no cure. It is so rare that there is very little research being done for this orphan disease, and few physicians are familiar with it and/or have treated it and understand it.
It typically begins in an isolated area following a trauma to soft tissue and then can spread through the entire body (not always, but unfortunately it has in Summer's case). She sprained her ankle, such a common occurrence, harmless for most, but for her it was the beginning of a 10 year battle with a condition that has reduced her life to one spent mostly in bed, as movement causes severe pain and often sends her into seizures.
There are far too many aspects of this monstrous condition for me to go into in detail. The long and the short of it is that Summer has been told to "go home and do the best she can" and she has, as best she can. She spends much of her awake time researching what is know about the condition and helping to educate others, even running a Facebook group to support others suffering with this condition, others who feel as isolated as she does.
Do not misunderstand, there is no room for self pity in her life. She is an absolute warrior, my super hero who humbles me constantly but she is human and it has been difficult for her to cling to hope when you know there is no help coming. As someones who loves her very much I have been witness to her painful demise, feeling completely useless and helpless and now heartbroken as she has been instructed by her doctor that any options may make things worse. There is nothing that can be done and her condition has deteriorated to the point of no return, she is now getting her affairs in order.
So here I stand, seeking your help to find a way to make one of her "bucket list" wishes come true, to create a special memory for her while there is still a slim chance for her to do it. With your help, I hope to send her to Toronto for the weekend to visit the Ripley's Aquarium, that is her wish. This will be an enormous undertaking for her but I am hoping it will give her something to fight for. I know, at the very least it will touch her soul deeply to know that people care enough to help her achieve it. Even if you personally can't help financially, sharing this fundraiser with your tribe would help enormously and I would be eternally grateful and in your debt.
Thank you from the bottom of my heart,
Stacey
Organizer
Stacey Burns
Organizer
Pierrefonds, QC