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im new to Baby Crowd online forums... any moms have a special needs child with Septo-Optic Dysplasia.. my evan is 6 years old.. we live in fresno ca, and can you believe it, in 6 years of go to Childrens hospital Central California all the time and me working as an aide for a special education school, i have never met another child that had septo-optic dysplasia... ↓
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| Name: laura | Date: Feb 11th, 2011 3:05 PM |
| hi my little girl is one and has same condition if you would like to chat about it my email is [email protected]. would love to see how ur little fella is doing and how you find everything ↑ |
| Name: matt | Date: Feb 12th, 2011 1:10 PM |
| sounds like you have a real trooper there tell him happy b day for all us not sure if this would be to old or not but what about surviver and just gear it to his age being that he is a real surviver ↑ |
| Name: melissa | Date: Jul 30th, 2011 4:28 AM |
| Hi, I'm new to this too. I alsow hav S.O.D. I have been going to childrens hospital in denver all my life. I just had my 19th birthday on the 26th. My parents and doctors didn't think that I would live this long because of my numerouse health problms. I also have O.N.H. so I am visualy impared. My sister also has S.O.D. She has cerival palse and is visualy impared. Last I checked there were only 5 other families in the world that have two kids with S.O.D. my mom is a single mom of four, three of witch are speacial needs. (By the way in case you haven't noticed, I can't spell so just bear with me ;-) I would love to hear back and provide answeres to any questions you may have ↑ |
| Name: melissa | Date: Jul 30th, 2011 7:22 PM |
| Hi, I'm new to this. I alsow hav S.O.D. I have been going to childrens hospital in denver all my life. I just had my 19th birthday on the 26th. My parents and doctors didn't think that I would live this long because of my numerouse health problms. I also have O.N.H. so I am visualy impared. My sister also has S.O.D. She has cerival palse and is visualy impared. Last I checked there were only 5 other families in the world that have two kids with S.O.D. my mom is a single mom of four, three of witch are speacial needs. (By the way in case you haven't noticed, I can't spell so just bear with me ;-) I would love to hear back and provide answeres to any questions you may haver ↑ |
| Name: Shawnna G.C. | Date: Dec 18th, 2011 8:05 AM |
| IM A 19 YEAR OLD SINGLE MOM OF A SOD CHILD HES 3 NOW AND I BEEN HAVING A TOUGH TIME WITH EVERYTHING I JUST WANTD TO MEET ANY PARENTS OR MOTHER OF AN SOD CHILD I NEED SUPPORT OR SOMEBODY TO TALK TO IM STARTING TO GET OVERWHELMD ↑ |
| Name: Britney | Date: Mar 29th, 2012 1:47 AM |
| Hi my son has the same condition we live in mereced ↑ |
| Name: Britney | Date: Mar 29th, 2012 1:54 AM |
| Hi im 19 years old also but my son is the one with SOD he is 2 years old and theres alot ii want to know. like if hes going to be able to see or have mental problems or even walk ↑ |
| Name: Heather | Date: May 21st, 2012 6:56 PM |
| My son Slade is 4 years old and SOD is just one of his obstacles. He is missing various parts of his brain and has hydrocephalus, without a shunt. He never crawled but did start walking at 3 1/2 years old. His speech is very delayed...BUT he has learned that he has diabilities and has taught himself ways to communicate his needs and desires. He is my 4th child, he has 3 teenage siblings that are beyond great with him. We have one of the most supportive church families anyone can ask for but above all we have THE GREAT PHYSICIAN on our side. God has blessed my life by sharing Slade with me. Slade was created just the way my savior wanted him to be in order to reach hearts and souls with his incredible testimony, whether he ever talks or not!! Please email me if you are searching for information, understanding, prayer or support. We were hand picked ya know!! [email protected] ↑ |
| Name: Tealeaf | Date: Jul 15th, 2012 2:00 AM |
CHECK IT OUT!
http://enabled2fightny.weebly.com
This is a new website that is dedicated to special needs children.
Spread the word. ↑ |
| Name: Brianna | Date: May 7th, 2014 1:47 AM |
Hello, my name is brianna, I have twins girls, my daughter bella has De Morsiers syndrome, she is currently 9 months old, and everyone I talk to has no idea what the syndrome is and has never heard of it, I am struggling wondering and pondering what life holds for her, all the worries in my mind of the challenges that she has to face in the future, it's breaks my heart to know that it is incurable and all I can do is sit back, I have read some many articles and understand somewhat what our future will hold!
Really could use some support from parents who are going through this aswell and enlighten me on their children accomplishments and successes aswell as their own stories!
Feel free to email me at [email protected] ↑ |
| Name: britney | Date: May 9th, 2014 4:46 AM |
| Hi i am new to this and i have a son that is 4 years old he has been going to childrens since he was born we live in merced ca he has s.o.d, hypopipturism, short gut and just recently diagoned with hormone defecncey so we just started his shots tonight and i am pretty scared and nervous becausr theres so many scary side effects i just want someone to talk to that is going through what were going through. ↑ |
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