My nephew and niece need your help!
I am asking you to help... I understand if you can't...
My nephew Isis and my new niece Phoenix have finally been diagnosed with Rigid Spine Muscular Dystrophy. It has taken over FIVE years to get this diagnosis. That is five years of my brother-in-law and sister-in-law worrying all the time. Having test after test done on Isis, and still not knowing what is wrong. It hasn't been easy for their family. It hasn't been easy for my family either. In many ways we are
thankful that we know what they have. We are all finally done wondering. Now that we know though... we are all sad. Rigid Spine Muscular Dystrophy is not any easy disease to have.
Since Isis was 6 months old he has been fed by a feeding tube. Originally it was through his nose down to his stomach, but now he has a plug
which is actually connected through his belly to his stomach. Everyday Isis sits for hours when a machine pumps food into his stomach. Tell me this... when was the last time you saw a 6 year old sit for hours to eat? How about a 1, 2, 3, 4, or 5 year old? Isis has done this his whole life. His parents taught him to read at a very early age, and so he either reads or draws to pass the time. I am attaching some drawings that Isis did, and that his mother colored for him.
Although there is no cure, there are ways to prolong life and help these children that have this disease. One is a cough assist machine that helps them cough. With Rigid Spine both my niece and nephew have very weak muscles. So weak in fact that Isis still cannot stand up by himself without having help or using furniture. He is six years old now. Phoenix cannot even sit, or does she even try to sit/crawl/scoot. We think she may be worse than her brother. The cough assist machine will will be used for both kids, and they will be hooked up in the morning to strengthen their lungs. Hopefully with this they can better fight off illness, and we can have them with us as long as possible.
My brother-in-law Nick is asking for donations for the cough assist machine. Even small donations will add up. It is not covered at all by insurance nor will he get one from the Australian government. Socialized medicine apparently doesn't think it is necessary. I guess it isn't, but will it ever help them. /sigh I am asking my friends and family to help me help them get this machine. I realize not everyone can donate, and I do not expect anyone to. I just want to give you the opportunity. Thank you friends!
Read below to find out how to donate, and to read up more about Rigid Spine. Nick has a blog and a website. The links are below. Thank you again!
From Nick... "Isis and Phoenix have a very rare disease called Rigid Spine Muscular Dystrophy. After attending a really great Muscular Dystrophy conference we discovered a machine that will help Isis and Phoenix to fight of Chest infections in the years to come. It is called the Cough Assist...
Attached is a flyer we are spreading around, because we are trying to get enough money for the machine which is $10,000 US.
If you can help us in any way please read the flyer, or visit the HERO: The Isis Barfuss Cough Assist Campaign website Nick built to find out how you can help. http://www.nickbarfuss.com/hero
Even if you can't (which is totally fine, please don't feel like you have to!) check out the following websites to find out more about Isis and Phoenix and their condition!
http://www.nickbarfuss.com/hero
A site created by Nick to help raise awareness about the importance the Cough Assist Machine for Isis and Phoenix.
http://rigidspine.blogspot.com/
**edit by jess**
dear friends and readers in the blogosphere...please help us by linking to either this page or directly to the websites nick has created (links above). we really want to get the word out here and raise awareness as much as we can... got any ideas? send them to us by email (bestmonkeyfriends AT yahoo DOT com) or leave a comment on this post. xoxo
My nephew Isis and my new niece Phoenix have finally been diagnosed with Rigid Spine Muscular Dystrophy. It has taken over FIVE years to get this diagnosis. That is five years of my brother-in-law and sister-in-law worrying all the time. Having test after test done on Isis, and still not knowing what is wrong. It hasn't been easy for their family. It hasn't been easy for my family either. In many ways we are
thankful that we know what they have. We are all finally done wondering. Now that we know though... we are all sad. Rigid Spine Muscular Dystrophy is not any easy disease to have.Since Isis was 6 months old he has been fed by a feeding tube. Originally it was through his nose down to his stomach, but now he has a plug
which is actually connected through his belly to his stomach. Everyday Isis sits for hours when a machine pumps food into his stomach. Tell me this... when was the last time you saw a 6 year old sit for hours to eat? How about a 1, 2, 3, 4, or 5 year old? Isis has done this his whole life. His parents taught him to read at a very early age, and so he either reads or draws to pass the time. I am attaching some drawings that Isis did, and that his mother colored for him.
Although there is no cure, there are ways to prolong life and help these children that have this disease. One is a cough assist machine that helps them cough. With Rigid Spine both my niece and nephew have very weak muscles. So weak in fact that Isis still cannot stand up by himself without having help or using furniture. He is six years old now. Phoenix cannot even sit, or does she even try to sit/crawl/scoot. We think she may be worse than her brother. The cough assist machine will will be used for both kids, and they will be hooked up in the morning to strengthen their lungs. Hopefully with this they can better fight off illness, and we can have them with us as long as possible.
My brother-in-law Nick is asking for donations for the cough assist machine. Even small donations will add up. It is not covered at all by insurance nor will he get one from the Australian government. Socialized medicine apparently doesn't think it is necessary. I guess it isn't, but will it ever help them. /sigh I am asking my friends and family to help me help them get this machine. I realize not everyone can donate, and I do not expect anyone to. I just want to give you the opportunity. Thank you friends!
Read below to find out how to donate, and to read up more about Rigid Spine. Nick has a blog and a website. The links are below. Thank you again!
From Nick... "Isis and Phoenix have a very rare disease called Rigid Spine Muscular Dystrophy. After attending a really great Muscular Dystrophy conference we discovered a machine that will help Isis and Phoenix to fight of Chest infections in the years to come. It is called the Cough Assist...
Attached is a flyer we are spreading around, because we are trying to get enough money for the machine which is $10,000 US.
If you can help us in any way please read the flyer, or visit the HERO: The Isis Barfuss Cough Assist Campaign website Nick built to find out how you can help. http://www.nickbarfuss.com/hero
Even if you can't (which is totally fine, please don't feel like you have to!) check out the following websites to find out more about Isis and Phoenix and their condition!
http://www.nickbarfuss.com/hero
A site created by Nick to help raise awareness about the importance the Cough Assist Machine for Isis and Phoenix.
http://rigidspine.blogspot.com/
**edit by jess**
dear friends and readers in the blogosphere...please help us by linking to either this page or directly to the websites nick has created (links above). we really want to get the word out here and raise awareness as much as we can... got any ideas? send them to us by email (bestmonkeyfriends AT yahoo DOT com) or leave a comment on this post. xoxo
eloquently composed by Brigitte Ballard at 7:17 PM
7 Comments:
I'm all teary now. I wish I could've donated more.
Have they thought about selling Isis' art work? It's beautiful! I bet it would sell.
selling the art work!! holy goats, batman, what a great idea!!!!
bridge, you should share that with jasmine.
i'm going to paypal right now...
Isis has sold his art... for Charity.
"At the 2007 "Moving Forward" Muscular Dystrophy Conference gala dinner, Isis help to fundraise for the event by selling four original artworks. "
I know that Jasmine and Nick are working on a website to sell Jasmines Artwork, and possibly Isis' artwork too.
Thank you everyone.
Can I link this post to my blog?
I would also like to link your blog.
Thanks!
I will as well and will be sending a donation. I have five healthy grandsons and am acutely aware of their good health and normalcy.
Paypal confirmed my contribution went through from gfisher here in Centerville, UT
thank you to everyone who has visited... stay tuned to our blog for an update tomorrow (we hope).
nick is a former cache valley resident, and his immediate family still lives here so this is supporting a local cause, even though this family lives in australia.
come back often!
xoxo
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