About the Author

My name is AmandaGrace McGarry, I’m 20 years old, married to my husband Christopher, who serves in the US Marines. I reside in Southern California and am currently pursuing a career in nursing.

I created this blog to make public my son’s story. He was born with type II/III Osteogenesis Imperfecta, commonly known as brittle bone disease. He has the most severe form of the disease, and his specific mutation is only the second ever documented. In addition, he was born with another rare genetic disorder, called Generalized Arterial Calcification of Infacy (GACI). This is also very severe, and very lethal. He is the only person ever documented with both diseases, as most cases of GACI are diagnosed at autopsy. Sean is my only child.

My goal is to educate people on the severity of this disease, provide general information, links, and support for all families with loved ones who are diagnosed with this disease. I’d also like to show how “normal” a child with OI is, and can be. Most people don’t know much about this disease, if anything at all, and neither did I.

Please feel free to follow my links to various websites providing OI information, other community boards, my personal facebook, and a donation page, where you can choose to donate to my family personally (for medical expenses, plane flights, equipment, etc) or directly to the OI Foundation website.





If anyone has any questions about my blog, would like to chat, wants to send me a personal donation, or has any additional resources or information I may not have, please don’t hesitate to contact me!

Email – mcgarry.amanda@yahoo.com

Facebook – http://www.facebook.com/littlewifey05 [also in my “links” section]

For any personal donations, please email me [refer to my “make a donation” page].


Thanks for coming by, and please, spread the word!

HANDLE WITH CARE!

Responses

  1. Thanks for sharing this Amanda. I am anxious to watch Sean’s progress. I still have 4 weeks before Harper is born, and though we have some idea of what is going on, we won’t know a whole lot until she gets here. My heart goes out to you guys. You’re in my thoughts and prayers. Thanks for creating this. I think it helps a lot.

  2. Amanda, My name is Alice Shanks, I live in Ohio. My grand daughter, Amanda, told me about you and your son. I’am so sorry to hear about him. My great grandbaby, is the same age as your Sean. The reason I’m writing this to you is, I wanted to tell you about this Mangosteen Juice. It is a very wonderful juice, it has been used for centuries in Asia and all over the world for medicinal purposes. I can’t say that it would help himm but it might. Babies, children anyone can drink it. There is a website for it. It is called MANGOSTEEN JUICE. You can bring it up and read all about it. I’am a distributor for this juice. If you should be interested in learning more about or talking to me, you can reach me at this address. I’am also on skype. You and your little boy and your husband are in my prayers. I saw his pictures and he is such a handsome little boy. Alice Shanks

  3. Amanda, I found your blog through babycenter. I’m a member on the May board as well. And though I’ve seen threads on Sean before, I’ve never read them. I try not to read all the threads as you know, so much drama goes on in th.em. I tend to only read the topics that concern my son or myself. Tonight for the first time, my curiousity got the better of me as like I said, I have seen several thread titles regarding Sean. I read your entire blog tonight. Reading it, I’ve cried several times and thank the lord my little James is ok. I know you’re strong and I just want you to know how proud of you I am. I’m proud of your husband for not giving up on you and Sean as so many men do in these types of stressful situations. My heart goes out to your family. Sean is a beautiful boy and though he is dealing with lots of stress from the pokes, prods, machines, and so forth, I know he knows, that it is all out of love. I love you for your strength and again want to tel you how proud I am. My prayers will continue with your family.

  4. Hi Amanda,
    Its kind of weird that I have a 11 year old and her name is Amanda Grace and a son with OI type III/IV. I have read everything about you guys and your son reminds me of Shane my son at that age. He is 7 years old now but for the first few years they could never tell me if he was going to make it from month to month. He had heart and lung issues at birth and was in the NICU for 2 months. I really could write a book about my son and family for going thru what we have. I am now divorced from their dad and it can tear a family apart or bring you together. Please what ever you do keep the lines of communication open between you and your husband.
    Sean looks happy so whatever you all are doing, keep doing it. Your a great mom and he will show you patience and love that you thought you never had.

  5. How is Sean doing? I was following your story on here and bbc. I hope all is well.


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