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Carter’s diagnosis - GRIN1 genetic mutation *UPDATE*

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Carter’s diagnosis - GRIN1 genetic mutation *UPDATE*

Old 07-03-2018, 05:31 PM
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I have a hard time with issues surrounding children, it hurts to see them suffer, medical ailments and abuse alike I have a hard time stomaching it. Special people you certainly are, god bless.
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Old 07-03-2018, 05:40 PM
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Beautiful little guy!
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Old 07-04-2018, 03:46 AM
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Thanks to everyone who donated. You don’t know how much it means to all of us. I hope there is some way I can repay all of you in the future.

After posting here and on our Facebook and Instagram pages yesterday, our total jumped from almost $300 to just over $2000. It’s so awesome to know so many people that care about our little man. May God bless all of you and your families. Have a happy Independence Day!
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Last edited by davidwademarine; 07-04-2018 at 04:05 AM.
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Old 11-04-2018, 06:36 AM
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I stumbled across this thread when I was trying to find out what kind of person would be so generous with their time and knowledge on this forum. And while it seems so unfair that Carter is given this condition, it is extraordinarily fair and right to him that he be born to parents with such compassion and generosity and ability to face the challenges of each day!

I have known two children that have proven every doctor wrong and far exceeded every expectation. I pray Carter will be the third. I see your GoFundMe page is still up, and I'm going there now.
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Old 01-17-2019, 05:50 PM
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I found this thread searching through some of Davids myriad of posts helping people with all sorts of questions and problems.
I know one thing, Carter has some awesome parents.
My thoughts and prayers are with you David and your family.
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Old 01-17-2019, 06:59 PM
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Just looked at y’all Facebook page. Man, he is one cutie pie. Seeing Carter play with the ball is amazing. I read this thread from the beginning. Looking at him on Facebook, Carter has exceeded all expectations. Believing God for Carters continued progress. You can definitely tell he is loved beyond measure. I am adding Carter, you and your wife to my daily prayer list.
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Old 01-17-2019, 07:13 PM
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Definitely another level of sadness when it's a child. Your beautiful little boy, wife and yourself have been on our prayer list since your first post and My bride and I are thrilled beyond words to see his progress far beyond what his Dr's could ever have imagined!
When I finally start to get back on my feet financially I will be sending what I can because I know for a Fact that the good Lord has a purpose in Carter that must be fulfilled, and with help, it will be. God Bless you, your bride, and Carter.
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Old 01-18-2019, 03:35 AM
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Thanks again y’all! We were able to purchase Carter’s bed with all of the help we received and couldn’t have done it without the support from a lot of THT members. It’s awesome knowing so many people care about our little man. Carter has been progressing very well and continues to exceed everyone’s expectations.
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Old 01-18-2019, 03:59 AM
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God Bless your family.

My older son has developmental disabilities, but is now 20 years old, living semi-independently, paying his bills, and working 35 hrs/week. I am so proud of him.

I will say this one thing, I got a lot of feedback from professionals about "understanding" him and not being too hard on him, and I largely ignored it and continued to push him to be the best he could be. I gave him the same expectations that I would have given to any son. It made things hard on us for a long time but I think it paid off in the end. He has drive to succeed and can do a lot of things like anyone else can.
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Old 01-18-2019, 06:29 AM
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Originally Posted by whorrall View Post
God Bless your family.

My older son has developmental disabilities, but is now 20 years old, living semi-independently, paying his bills, and working 35 hrs/week. I am so proud of him.

I will say this one thing, I got a lot of feedback from professionals about "understanding" him and not being too hard on him, and I largely ignored it and continued to push him to be the best he could be. I gave him the same expectations that I would have given to any son. It made things hard on us for a long time but I think it paid off in the end. He has drive to succeed and can do a lot of things like anyone else can.

What a wonderful success story, and it all became a reality because you refused to do what the "Expert" said would be best! I've said it over and over again, Common Sense trumps sheltered academia 99% of the time!

You and your spouse should be very proud of your accomplishment with your son, sounds like a great young man!

GO CARTER!!!!
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Old 01-18-2019, 10:54 AM
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I'm rooting for you and your family
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Old 02-04-2019, 12:58 PM
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Just saw this thread and want to tell you it is a real inspiration.

My grandson (Owen on the prayer request thread) was diagnosed with a recessive mitochondrial disease at the age of three months. He was missing milestones on his routine visits and was listed as "Failure to Thrive" on his checkups. His pediatrician accredited it to "Just Reflux" and kept telling my daughter he would soon grow out of it. Then he started having seizure-like symptoms and then my daughter (who is a NICU nurse) decided this was much more than reflux. After many specialist, a muscle biopsy, and a spinal tap they diagnosed him with Leigh's syndrome. A mitochondrial disorder. Mitochondria are responsible for getting energy to the cells.

Long story shortened, he just got out of a 58 day hospital stay where he got a J-Tube and a G-Tube (which not using yet until an abscess heals). Lots of complications and a few medical errors extended the stay beyond the 2 weeks that were projected.

He is now comfortably at home and receiving lots of love and various therapy sessions. We are praying that in time some of his developmental delays will be reversed. He has already started growing after they got him on continuous feeds and some supplements.

Thanks again for sharing. I will continue to pray for your Carter's progress.
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Old 02-04-2019, 04:40 PM
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Striperk9, glad you posted. Still pray for Owen and your family as well as Carter and his family daily. Glad to hear he is finally out of the hospital. God bless.
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Old 02-05-2019, 03:40 AM
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I just noticed Carter’s thread got stickied. Thanks again for everyone’s thoughts and prayers. We are continuing down life’s uphill unbeaten path. Carter began having some seizures several months back. We have been controlling it fairly well with standard seizure medications (tried 3 or 4) and CBD oil. He is approved for medical THC oil once it’s available in Louisiana this spring. Besides that, he is still making progress. His therapists’ reports always state they see small improvements with each visit. He’s more attentive and focused on people, toys and other objects. His mood is much better as long as he’s not hungry or tired. Several new syllables have been added to his ‘vocabulary’. He is even starting to ‘launch’ himself out of his bed when my wife or I go to get him out of bed. He’s growing into a little monster. My wife documents some of the craziness on his Facebook page. My Carter Man Can

Striperk9: Thanks for sharing, we will keep Owen in thoughts and prayers as well. One of our biggest fears before Carter’s diagnosis was a mitochondrial disorder. Playing Dr. Google seemed like every symptom he had pointed in that direction. We’ve been down the ‘it’s reflux, they’ll grow out of it’ road. I can’t count how many times we heard that all the way up until his Nissen surgery. Experiencing something like that will make you wonder how much some of these doctors actually know. It’s crazy to see the progress they can make when their nutrition is retained and able to be processed through the body. If your family needs anything, please let us know. Either PM me or message my wife on Carter’s Facebook. God bless y’all.













Last edited by davidwademarine; 02-05-2019 at 03:47 AM.
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Old 02-05-2019, 04:27 AM
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Thanks. I will post an update photo for Owen on the prayer thread.
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Old 02-05-2019, 02:24 PM
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Awesome, awesome, awesome, little man. So very glad to see he is progressing and you, your bride and all those who know the little guy can experience the true Joy of being a parent!
Continued prayers that the Good Lord will take care of Carter for many, many decades to come!!!
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Old 02-13-2019, 06:40 AM
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David......how's our internet adopted young man doing?
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Old 02-13-2019, 04:29 PM
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David, Carter in is our thoughts and prayers. I know how hard it is, dealing with lifes curve balls thru personal experience. When my daughter was born, she was an emergency c section about 3 weeks premature, due in part to my wife being a type 1 diabetic. Long story short she aspirated her amniotic fluid before the staff had a chance to clear her airway and when they passed my daughter past me to the little incubator she was grey and not moving or breathing. Without a doubt that was the scariest moment of my life. The staff got her breathing again and she spent a week in a nicu.What made it worse was my wife was still on the table asking why Rylee wasnt crying and why she couldn't see her. Today, shes a little hellion, giving her sister, both sets of grandparents, and our dogs a run for there money. Keep your chins up, your being watched over.

Now that I can actually see again thru the tears, I saw that you mentioned there is a genetic convention in Europe, that you probably wont be able to attend. I work contract EMS for the Orange County Convention Center. Weve had several medical conventions come thru. 1 thing I did notice and you may want to look in to this is that some of them now do live streaming of the seminars. It might be possible to attend from home.
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Old 02-14-2019, 02:55 AM
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Originally Posted by spraynet 1 View Post
David......how's our internet adopted young man doing?
He’s doing great. Battling the terrible twos with a child who can’t communicate isn’t the easiest thing in the world, but we’re managing. Finally got approved for Medicaid. The only daycare that can handle special needs children accepts only Medicaid and doesn’t take private payments. We go tomorrow for his evaluation at the local school district. It seems like just yesterday that we were headed to the hospital.

Originally Posted by RCL View Post
David, Carter in is our thoughts and prayers. I know how hard it is, dealing with lifes curve balls thru personal experience. When my daughter was born, she was an emergency c section about 3 weeks premature, due in part to my wife being a type 1 diabetic. Long story short she aspirated her amniotic fluid before the staff had a chance to clear her airway and when they passed my daughter past me to the little incubator she was grey and not moving or breathing. Without a doubt that was the scariest moment of my life. The staff got her breathing again and she spent a week in a nicu.What made it worse was my wife was still on the table asking why Rylee wasnt crying and why she couldn't see her. Today, shes a little hellion, giving her sister, both sets of grandparents, and our dogs a run for there money. Keep your chins up, your being watched over.

Now that I can actually see again thru the tears, I saw that you mentioned there is a genetic convention in Europe, that you probably wont be able to attend. I work contract EMS for the Orange County Convention Center. Weve had several medical conventions come thru. 1 thing I did notice and you may want to look in to this is that some of them now do live streaming of the seminars. It might be possible to attend from home.
Glad your daughter made it out ok. Sounds like y’all have a handful now. My mom told me that I experienced a similar no breathing situation at birth from being asthmatic. I’ll take her word on it as I don’t remember much from that day. They recorded both the meeting we attended in Toronto last summer and the Europe meeting. It was very beneficial to a lot of families who weren’t able to make the trip. It looks like this year’s meeting will either be in New Jersey or Atlanta. Either way, we will attend.
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Old 03-17-2019, 02:15 PM
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GRIN Disorders Research Foundation

The GRIN Disorders Research Foundation website has been launched if anyone would like some more information about the different GRIN disorders. The GDRF is dedicated to finding a cure for GRIN genes disorders. GDRF is a parent-run organization funding research and building awareness. They’re still working on the website, so there may be some kinks that still need to be ironed out.
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