Nicky's Medical Fund
Donation protected
This is my son Nicky and his younger brother Connor. Nicky was born with a very rare and severe form of Recessive Dystrophic Epidermolysis Bullosa (Hallopeau Siemens, also called Severe Generalized). His body does not produce Collagen Type VII which means his skin tears off and blisters at the slightest touch. His body needs to be wrapped in bandages to allow his wounds to heal and prevent new ones. We change bandages daily.
He can also get blisters and therefore wounds in all mucosal surfaces, such as his eyes, mouth, throat and esophagus. Because of this he cannot eat normal foods (only mostly soft or liquids), hence he's been g-tube fed since he was 3.5 years old when he was deemed "failure to thrive".
Taking care of him has been a challenge, various insurance companies denied covering the bandages needed to take care of his wounds for many years, leading us into bankruptcy. Twice.
Nicky is 24 years old and I, his mom, am his main caregiver and I am unable to have a career/job because my son's care is very time consuming. He cannot walk or move much. He's completely dependent on me for everything.
Not a month goes by that I do not spend at least $250 in just co-pays, medications and supplies not covered by insurance. Many more months it can be much more than that if there are multiple Dr. appointments, blood/iron infusions or surgeries, which require copays, gas money and parking costs. If then we have to go to Stanford for surgery it can be easily a $400 trip just between the hotel and gas. Recently a couple of items that we use a lot for Nicky (Webril and Regenecare HA) are no longer stocked by our supplier, so those have become out of pocket expenses as well for us. I added those things on Nickys wishlist on Amazon , which include medical equipment, creams and what-not that we need on an ongoing basis along with some things he would like to have.
In other words, taking care of Nicky is expensive and time consuming.
I don't want another bankruptcy so I figured I'd set this up. I am no longer too shy to ask for help.I am trying really hard to save every penny I have. I cut coupons, I shop at thrift stores and I never buy anything retail.
Another way you can help me financially is to purchase my book "Butterfly Child" (http://www.butterflychildamothersjourney.com) or any of my other books.
Here's the Book Trailer:
or more on Nicky, you can visit my blog: http://blog.silviaskingdom.com/
Thank you from the bottom of my heart <3
Silvia
Follow Nicky at his Page on Facebook: https://www.facebook.com/NickyLivingWithEB
This below is the video from Nicky's appearance on "Body Bizarre", season 5, episode 1.
He can also get blisters and therefore wounds in all mucosal surfaces, such as his eyes, mouth, throat and esophagus. Because of this he cannot eat normal foods (only mostly soft or liquids), hence he's been g-tube fed since he was 3.5 years old when he was deemed "failure to thrive".
Taking care of him has been a challenge, various insurance companies denied covering the bandages needed to take care of his wounds for many years, leading us into bankruptcy. Twice.
Nicky is 24 years old and I, his mom, am his main caregiver and I am unable to have a career/job because my son's care is very time consuming. He cannot walk or move much. He's completely dependent on me for everything.
Not a month goes by that I do not spend at least $250 in just co-pays, medications and supplies not covered by insurance. Many more months it can be much more than that if there are multiple Dr. appointments, blood/iron infusions or surgeries, which require copays, gas money and parking costs. If then we have to go to Stanford for surgery it can be easily a $400 trip just between the hotel and gas. Recently a couple of items that we use a lot for Nicky (Webril and Regenecare HA) are no longer stocked by our supplier, so those have become out of pocket expenses as well for us. I added those things on Nickys wishlist on Amazon , which include medical equipment, creams and what-not that we need on an ongoing basis along with some things he would like to have.
In other words, taking care of Nicky is expensive and time consuming.
I don't want another bankruptcy so I figured I'd set this up. I am no longer too shy to ask for help.I am trying really hard to save every penny I have. I cut coupons, I shop at thrift stores and I never buy anything retail.
Another way you can help me financially is to purchase my book "Butterfly Child" (http://www.butterflychildamothersjourney.com) or any of my other books.
Here's the Book Trailer:
or more on Nicky, you can visit my blog: http://blog.silviaskingdom.com/
Thank you from the bottom of my heart <3
Silvia
Follow Nicky at his Page on Facebook: https://www.facebook.com/NickyLivingWithEB
This below is the video from Nicky's appearance on "Body Bizarre", season 5, episode 1.
Organizer
Silvia Corradin
Organizer
Lancaster, CA