Updated posted by Mike Murray 14 months ago
Hello everyone, We wanted to thank you...
Hello everyone,
We wanted to thank you all for the prayers and help so far. Owen has now finished his first, and hopefully only, round of ACTH. Last week he went in for an EEG and while there are some signs of continued seizures, they do not appear to be linked with his infantile spasms.
Owen continues to be immunosuppressed , so unfortunately we still have to limit the visitors around him but things are looking up. He has as we all know a long and difficult road ahead, but I think that in the end he will make it.
As far as all of your help and support… THANK YOU!!!!!!! You have really made a difference in our lives. Val and I will make a point to personally thank each of you… but please give us just a little time to normalize our lives just a little bit first.
That being said, we would like to move away from raising money and more into raising awareness for this things that Owen is going through. When you type in these illnesses into Google after hearing them for the first time you see some really scary stuff. We will be starting a blog with Owen’s story in the hopes that it gives a least a little peace of mind to those that wonder upon it. We will be shutting down this site sometime next week.
His new site is http://owenmurray26.blogspot.com/
Thank you for everything,
The Murray’s
Updated posted by Mike Murray 15 months ago
Here is the link to Owen's...
Here is the link to Owen's friend Hazel. Any words of encouragement are appreciated. Link it, post it, share it!
Let's get another baby the help they need!
http://www.gofundme.com/HazelSievers
God bless,
The Murray's
Updated posted by Mike Murray 15 months ago
All, Thank you so much!!!!!!!!! When we created...
All,
Thank you so much!!!!!!!!!
When we created this site, we never thought we would hit 5k let alone in 2 days.
Val and I will of course be making the overage as donations to CHASA and Children's hospital.
That being said... I think we should start a giving epidemic! Both times that we have been in the hospital, we have been here with our friends from high school and their daughter Hazel. She has just finished her third surgery since being diagnosed with brain cancer...
While it is comforting to have friends you know in the hospital, we would rather not have them be here.
Any help or prayers that you could give them would be greatly appreciated.
God bless,
The Murray's
Created by Mike Murray on January 29, 2012
Please donate to http://funds.gofundme.com/hazelsievers
We have reached our goal!!!! There are still kiddos who need help.
Our Story:
** Photos courtesy of Edward DeCroce Photography
Our beautiful son Owen was born on August 26, 2011. He shares his birthday with his dad and his heart of both of us. Unfortunately, on November 13th 2011 he suffered from a pediatric stroke that caused brain damage to his right frontal lobe. After the stroke we were told that Owen may not be able to walk and would likely lose the majority of movement in his left arm and hand. Owen was working hard to prove them wrong. Attending physical and occupational therapy, Owen began using his hand to show the doctors that he is too stubborn to listen to them.
On January 27th, 2011… Owen went in for a EEG to see how he was progressing since being taken off one of the many medications he is on. During that time we found that Owen was having infantile spasms. Infantile spasms are an extremely dangerous kind of epilepsy that is often linked with developmental issues. Owen now has the tough job of going through a diet and steroid regiment in addition to all of the other work he was already doing. We are confident that Owen will once again beat the odds and show us how tough he his!
That being said, spending a lot of time in the hospital and having so many different types of care can start to get extremely expensive. A lot of folks have asked how they can help. We are accepting donations to help us pay for Owen’s expenses. We will use this money to help pay for his medical care and any ongoing care he may need in the future.
We plan to donate anything that is left over from the amount to Children’s Hospital and CHASA on his fifth birthday.
** As a note, any donations are not tax deductable and are considered the same as a personal gift from a tax perspective.
Below are some links to more information:
http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm
http://www.medkaau.com/vb/showthread.php?t=3311
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God bless Owen :)
posted by Mark Angelo Carolino 6 months ago
My prayers are with your family in this very hard time. My daughter was diagnosed with IS in February 2010 and it is a fighting battle. I hope that he continues to prove the doctors wrong. If you have questions of would like to take to another mother that has been through the IS treatment please contact me via my Facebook.
posted by Kalyn Dennis 15 months ago