Adam, Austin, Phoebe,Andy & Rhy’s Story
Adam wasn't quite 3 and diagnosed with Mitochondrial Myopathy Complexes I & IV on June 4th 2008. Austin wasn't quite 7 and he was diagnosed with Mitochondrial Myopathy, April 26th 2011. Keep Updated with them and our other children as we go thru this journey. We are asking if you can help to offset medical costs that are not covered by Ins. Please donate to Adam thru PayPal! His paypal account is firstname.lastname@example.org . I will update what we need at bottom of our story! God Bless!
Adam is a little brother to Andy (15) and Austin (6) and a big brother to Phoebe (4).. Andy and Austin are on the autism spectrum.. But, Adam was definitely my "Angel" baby... He was different from the start and we knew it. We couldnt prove it, but he was.. We noticed early on that he could not eat like my other babies and the left side of his face was droopy. They told us it was a intrauterine stroke and that he was doing well with therapies and would be fine. For 2 years, this is what we were thinking.. Then around his 2nd bday we noticed he started to seem "weaker" and "sluggish". We started going to Doctors at childrens and they couldnt find anything wrong. I KNEW there was something going on somewhere.. From his 2nd bday to 2 1/2.. he developed a heart murmur and the left side of his heart was slightly enlarged. Nothing the cardiologist was concerned about.. yet.. My gut kept telling me that there was just something NOT right with Adam.. Our peditrician agreed and we pressed on by moving over to Cardinal Glennon's. They did further testing that led to doing a muscle biopsy. We have waited for a year of doctors telling us there was nothing wrong and knowing they were wrong to our diagnosis we are at as of today.. Mitochondrial Myopathy Complexes I & IV.. So our days of "weakness", and pushing things around the house for support, and unexplained exhaustion is all explained now. . . I will keep you posted with information and the things we are going to do for treatment... At this moment in time, we dont know much and we are just waiting to hear back from doctors to see what we are going to do.. Thanks for coming here and thanks for visiting Adams Site! :) God Bless!
Austin as of June 2010 was also diagnosed with Mitochondrial Disease. At this point they are opting out of doing the biopsy due to the fact treatment will not be affected either way.. So Vitamin cocktail for him as well.. We have noticed a rapid decline in his health over the summer. Slurring speech, studdering, increased leg/back pain, increased fatigue and crankiness! Dr. S is pretty sure that is what Austin has symptimatically and family history.. So we will start him on the journey along with Adam to having all the docs and checking up on him. Neuro Muscular in Jan 2011.. I will update on him as well as we go thru his journey.. Thanks for the prayers!
Phoebe has also officially been diagnosed with Selective Antibody Immuno Defiencey and has been receiving IVIg treatments at the hospital for a year now.. We just changed over to SubQ weekly treatments at home begining of Dec 2010. She is doing well with it and its much easier for all of us.. She is on this for a min of 2 years and then depending on how she does, it maybe longer or lifelong.. just depends on her system and if it can start making the antibodies.. We will be having her tested for Mito too.
PS.. IF you want to do something for Adam, Austin & Phoebe, keep them in your prayers and thoughts..and sending them mail, they love it.. to: 308 S. 9th St., New Baden, IL 62265 they would love to hear from you:)
He loves getting mail and messages on his guestbook!
We have also set up a PayPal account to help offset some medical expenses that are not covered. If you would like to help them please donate to thier paypal account at www.paypal.com and his addy is email@example.com ! Thanks and God Bless
Things we are needing as of Jan 2011.. Monthly we need to buy thier vitamins that are in the Mito cocktail, these are not covered under insurance and are not cheap! Each month it costs roughly $200-250 for their vitamins, specially now that we have to give it to Adam & Austin. We need a big van(like the little bus) so we can all go somewhere together and have the wheelchair lift so there is enough room for equipment and wheelchair.. We dont know for sure how much but alot.. Please help us achieve this so we can get a vehicle we can use as a family! A medical stroller $1900 for the one we need for Austin, he has gotten to the point he can not tolerate a lot of distance walking now.. TY & God Bless