If you enjoy reading Adventures in Raising a Disabled Child, all about Whitney and her progress with 1p36 Deletion Syndrome, there are a few other blogs you really ought to check out:
Whitney and the family met our friend Brady, who also has the same disorder, just before Christmas. His parents Kajsa and Troy keep a very informative and touching blog about his progress. You can read it at http://farnsworthphoenix.blogspot.com/
At the 1p36 Deletion Conference last November we met Alayna whose Mom, Angie, posts all about her 1p36 experiences as well. She recently posted about the one year anniversary of Alayna's diagnosis and it was one of the most heartfelt things I've ever read online. Don't miss it! http://alaynadekeyrel.blogspot.com/
I'll be adding these to my links sidebar for folks to check out. Also, for family and caregivers of children with 1p36 Deletion Syndrome, the Yahoo Support Group can be found in my sidebar links as well. And if you are aware of other blogs or web pages about families touched by 1p36 Deletion Syndrome please share them in the comments.
6 comments:
Thanks for the shout out. Like Angie mentioned on her blog, I also don't know what I would have done without your blog in those early days when nobody had any information for us. In fact, I was so relieved when they told us that Brady had a 1p36 deletion rather than one of the metabolic disorders they had initially suspected. My exact words to Troy were, "I am so glad it's 1p36. I have been reading about this little girl. She is so adorable and smart and healthy..."
I hope any other newbies out there are able to find these blogs and know they are not alone!
Thanks Kajsa! It does feel great to be an advocate for children with 1p36 Deletion Syndrome. There are a lot more of us out there now. I'm sure as new diagnoses are made, the families will find us and hopefully find some hope too!
My blog is http://candle-ends.blogspot.com. It's not only about Misha, but he is the bright center.
Thanks for the other links. It's always good to read what others are experiencing.
Josh
Hi Josh, thanks for the link. I've added it to the sidebar as well. It's a great way to keep up with how all these little ones are doing.
Hi - my son is 7 months old and has been diagnosed with 1P36 deletion. Does anyone else's child also have a metabolic disorder? They have found high levels of uric acid in Tom's blood and a world leading specialist has never seen this pattern before. They are wondering if it is why Tom is so tired all the time. Any advice appreciated.
We haven't been through the metabolic disorder troubles Tom has with Whitney. I wish I had more information to share. I see you've asked around in the Yahoo group so I'm hoping someone there will have good answers for you. Good luck!
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