You have one amazing son. He is beautiful and I pray that they help you and your husband take care of your little boy....COLE.
I wish that I had some extra money to help. I know that you are not asking for any but I know that the hospital bills alone are outragious. pls keep me informed on cole. I would really appricate that. You may email me at alica_steve2@yahoo.com. feel free anytime.
Alica
Cole is a beautiful little boy. I'm sorry that you have had to go through so much and gotten no answers. I was a Foster Parent and had a child in my home that was very sick. Now she is gone. And I work with kids that have MS and CP it is a very hard thing. But many rewards with these kids. YOu will be in my Prayer's. I pray that you will reach that one person that can help. Don't ever give up. And keep the faith. God Bless You
My heart goes out to this family. Our firstborn was operated on when he was six hours old and had three major surgeries before he came home at two months. We learned many valuable lessons about trusting God through these tough time. I have forwarded this site to everyone on my email list and posted it as a link on my website.
I just saw your story of your son Cole. He is such an adorable and cute little boy. My heart goes out to you and your family.. Just remember to keep your strength and faith and God will help you through this... He is the Great Physician of all... My prayers are with Little Cole and your family.. May God Bless Cole and your family abundantly
Hi Hanna, We just had a child and we were worried sick after an abnormal 3rd trimester prenatal ultrasound predicted a genetic abnormality that would likely mean developmental delay, balance and mobility problems, etc. However, we were blessed when our son was born because we had a head ultrasound done when he was a week old and the results came back "normal". We were so relieved! Anyway, with your son Cole, I am not a doctor but I did a lot of research during those weeks of worry and it sounds similar to a few of the disorders that I read about, including Usher Syndrome (did they mention that? It involves vision and hearing problems as well as balance and developmental delay - walking, crawling, etc). There is a group of disorders recently linked together and called "The Retinal Ciliopathies". They have found that the same gene mutation can cause a number of different disorders, that are seemingly unrelated. Check out http://www.informaworld.com/smpp/content~content=a782473199~db=all
Our son Seth came down with West Syndrome/Infantile spasms at 6 months of age. It had nothing to do with vaccines or any other external phenomena. I have a brother that has epilepsi that developed when he was 17 and another relative a couple generations back may have had undiagnosed West Syndrome. So It may run in our family much like they suspect Alzheimer's or breast cancer can be. Seth was put on Phenobarbital and Topamax at his diagnosis. We found a good neurologist and we made it a point to both be there for those appointments. It was hard to give our baby the medication orally but we became inventive, to the point he doesn't like apple sauce anymore. He just past his fourth birthday and as another milestone he started using the pedals on his tricycle. The speech is coming along, but he is hold out on his toilet training. We are thankful we have him to share with his brother and sister. God has taught us so much through his illness and patience is a Godly Virtue.
ITS THE VACCINES Brain hemorrhaging and retinal hem. are listed on the vaccine package insert as some adverse reactions. It also says if the child crys for more than 3 hrs, is vomiting, having seizures then do not give that child any more vaccines. To do so will create more brain damage. Most doctors do not go by this, they tell moms that its normal for a baby to do this stuff. Alot of babies could be saved from suffering if DOCTORS HAD A BRAIN OR COMMON SENSE. With your next child DO NOT VACCINATE and you will have the HEALTHIEST BABY EVER. All vaccines do is damage the iimmune system and brain.....
hi my name is dawn. i saw ur story about cole. it made me cry. i will make sure to pass on his story. he is so cute. i will keep him in my prayers and heart.
hi my name is dawn. i saw ur story about cole. it made me cry. i will my sure to pass on his story. he is so cute. i will keep him in my prayers and heart.
My son's health was greatly challenged although his was not as severe as Cole's. Our first pediatrician was clueless to his problems. The Lord led me to another doctor who had such wonderful insight and helped my child (and I get well). I will be praying for little Cole, as I know the pain of having a child who is not well and no answers as to why. I do strongly believe in Divine healing as well, so I will be praying for total healing for him. I encouarge you to read the Bible and see that this is something that Jesus Christ died for us to have. It says that (referring to his beatings before he was crucified) "by his stripes we are healed". I have little Cole's face in my mind and heart now and will begin praying. I will check back to your sight for updates. Angie
http://rughzoo.webs.com/apps/blog/
I wish you the best.. three consideration to discuss with your pedineurologist if you have not done so already:
1. NEURAMINIDASE DEFICIENCY : http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=256550
2. PKU: although the typical forms are pick up routinly on prenatal screens: odd varients can be confusing and can explain some of chole's symptoms ( ask your neurologist if he can do csf neurotransmittor studies and csf screens for lactate and pyruvate) - this is a long shot but some of the forms of these diseases are treatable and therefore worth testing for.
3. 1p36 deletion, often picked up chromosomal microarray if one has not already been done.
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=del1p36
FIRST LET ME SAY YOUR BABY IS BEAUTIFUL GOD BLESS HIM ONE YEAR AGO TODAY I ASKED MARY TO HELP MY MOM SHE HAD SUFFERED A MAJOR STROKE MOST PEOPLE DO NOT RETURN FROM I ASKED HER TO ASK JESUS TO HELP MY MOM AND I IN RETURN WOULD HELP HER . MY MOM IS HERE WITH ME TODAY AND I THANK GOD EVERYDAY FOR HER I WILL ASK FOR YOU ALSO AND PRAY FOR YOUR FAMILY AND PEACE GOD BLESS ALL OF YOU
Hanna...God Bless your lil' boy Cole! He truly is precious and beautiful. I will pray for him, as well as your family, in hopes that they will help your little Angel. What a doll, and such a trooper! I wish all the best!
Hanna,
My name is Heather Long. My son Cal passed away 2 years ago at the age of 5 - undiagnosed. Since then I have been working on ways to help families like ours find the answers they need and get the help that they deserve.
On May 21, 2009, Congressman Carter introduced legislation at my request, that if passed will create an National Undiagnosed Diseases Registry. It is called H.R. 2538 The Charles August 'CAL' Long Undiagnosed Disease Registry Act of 2009.
If this registry becomes a reality, it will help doctors who are managing cases like your son's and mine with other doctors and researchers to help find the answers we need.
I encourage you to call me so I can speak with you personally. I am going to Washington in July and would be honored to share your story with as many of our law makers as I can - with your permission.
Hi Hanna & family!
I will keep you all in my thoughts and prayers. My little nephew due anytime soon has been diagnosed with trisomy 18, cdh etc..
We are all very worried, as Im sure you all are.
Its a worrying time.
Look after yourselves and your little man.
Hanna.
I have a friend whose child sounds like yours.
Have you ever heard of tuberous sclerosis?
I think you should check into it.
Hope this helps,
Renee
please don't give up hope, Doctors were not sure if my daughter would ever sit up, walk or crawl. She did not reach milestones at the normal time at all, hypotonia was part of the cause no real diagnosis for all her problems. Yet she walks, talks somewhat at five she is developmentally arount 3.5 years old.
Hi Hanna and family! Watched your video...
had to share that Cole is not as unique as you might think - unfortunately.
Please check undiagnosed-usa.org and consider joining our message forum.
Kelly-Ann
Saw the wonderful but very sad video of your son Cole. My partner Rick and I will do everything we can in forwarding this video to everyone we feel might be able to help Cole. Of course, we can not promise anything except our thoughts and prayers to help ease you a bit on your quest for a cure. Please let us know, if possible, of any progress that you might have found.
My name is Bruce and Mike Shaughnessy and Judy Cray are my niece and nephew. Let them know we will do what we can for Cole and our fellow Vermonters up there in B.F.
God Bless
Bruce and Rick
I too can only offer your family my family's prayers and hope for a happy life for Cole. God has delivered to you such a beautiful boy to love and care for. He has given him to you because he knows that you will give him every chance he deserves to get better & live happily with your arms wrapped around him. Just remember you are all not alone in this fight, God is walking with you all of the way. Keep fighting for him as he deserves all the love you can give him. Cole is wonderful and knows that he is so very loved by you, your family and friends. That Hanna, is what will get him through this. Please keep us posted as we would love to hear how things are going with Cole and your family. cpingel@sbcglobal.net.
Hanna, I just got internet access today and watched your video of Cole and it truely touched my heart! I'll be sure to forward it on to everyone in my address book! Good luck and you guys are in my thoughts often!! All my prayers to Cole, your beautiful little boy!
-Katie
Hanna, My daughter is very similar to Cole, I would be glad to share with you the information I have rcvd in recent years, Gracelyn is now 2. A friend of mine fwd me this link because they thought of my daughter, however, my daughter has a diagnosis, but I wanted to introduce a few things to you that helped us get the diagnosis, it is a new test, and is only done when you scream and yell, but is not painful, just simple bloodwork... you just have to kick & scream at the drs to get them to do it! :) ! My daughter is 3 with Hypotonia, Eye disorder, seizures, respitory issues, dysphagia etc... the list goes on! I loved your video... I hope to get in touch my email is mommy2gracelyn@gmail.com
Cole is a beautiful little boy... My heart and prayers go out to you and your family. Don't loose faith.. God has a plan for everyone!
God Bless you all ,
Peggy in New Hampshire
hanna,
I could not imagine what you are going through and it angers me that your poor little boy has to go through this. I will keep you in my prayers always. My god bless your little boy
I was forwarded your video by a friend and I was touched and moved beyond words. I felt an immediate connection with your son because he was born on my daughter's second birthday. My heart goes out to you, your family but of course most especially to your precious Cole. I am not in the medical field but did send this to a friend who is a neurologist. I don't know if these are things you have already explored, but I wanted to send it along just in case because as you said, it only takes one person. Here is what he said:
They need to see a Pediatric Neurologist, if they have not already. It's sad, but the kind of thing that we see from time to time, unfortunately
The symptoms this child has are all potentially due to a number of different causes. One possibility is a type of muscular dystropy called FSH or FSHD (fascioscapulohumeral muscular dystrophy), although infantile spasms are rare in that condition.
I hope this may be of some help!
Sincerely,
Katie Short
He is your gift from G-d. Having a daughter with an undiagnosed syndrome with so many health problems to challenge the medical field too, I pray for you and will pass this on to EVERYONE. G-d bless you and your family. Whatever the master plan is.....Michele
I pray that you find a cure for little Cole...Your whole family is in my thoughts and prayers. Life is very precious...it is wonderful to see his smile...I hope that he doesn't have to endure much more pain in his life...I will forward this on to everyone I know. God Bless you all!
I am praying for you and your baby. He is absolutely beautiful and it breaks my heart to see him and you endure so much pain. but he keeps smiling!!! He must have some awesome parents!!
Thank you so much for your very kind words. They really mean alot to us! We really appreciate your support and cannot thank you enough for helping us share Cole's story.
Kristen,
Thanks for your support and for taking the time to watch our video,
Jane,
Thanks for watching and forwarding Cole's video. He has hard his NDP and Frizzled 4 gene tested for a Norrie disease as originally it was suspected he might have FEVR. But all testing came back normal. I do know that whatever Cole has differs from FEVR in that not only does the fluid leak and build up behind is retina but it is also building up between the individual layers of his retina itself.
We are hoping to get more genetic testing started soon.
Hi, I am a NP that saw the video. Talked to a friend of mine and he sent this comment.
Jane,
Cole could have an NDP related genetic disorder or Norrie disease (see links below) and genetic testing is available.
Greetings,
Jose E. Martinez, MD
Clinical Genetics
University of South Alabama
Hi! Hanna-we haven't met, but I work w/ your sister @ the Retreat & she talks alot about Cole[in a very loving & "sisterly" way:) ]. Cole is such an adorable, cute little boy. I wish I had an instant "fix me" button,or knew something I could tell you for sure- that wasn't too "cliche-like", that I could say to you. I will tell you this, for sure-as this is something that I do know, & that is if your at all like Emily-you'll NEVER give up, as well you shouldn't. This video is wonderful & send it everywhere & anywhere that will possibly get it at all. You & your family will forever be in my thoughts & prayers. I will do my part as well, to pass this on to as many people, friends & family that I can. I hope we can meet someday. I know that the few tears I've shed, in just watching this amazing video story are probably nothing compared to what you have experienced to this point. I really do believe that we are not given in this life- more than we can handle. Stay strong & keep focused!!
Thank you both so much for your kind words and support. Cole has definitely taught us so much in the last 14 months. We know not not to take anything for granted and to definitely cherish what we have. He is such an inspiration and we are so lucky he chose us as his parents.
Thanks again for taking the time to listen to Cole's story and help us share. We appreciate it more than we could ever express through words!
Hanna, I cannont tell you how very sorry I am for all you and your family has gone through...I hope and pray that you get the answers that you are looking for. This is an absolutely heart-wrenching story and it certainly makes me appreciate what I have. I went through many miscarriages before I had my second daughter, who is now 5...I never wanted to give up because I knew someday I would have two beautiful red-headed girls. I got my wish, but it doesn't make me take one day for granted. I hold them tight every night and know that I am truly blessed. My heart goes out to you and your family. I hope in the near future you have a prognosis and it is treatable. Cole is such a precious little boy! Take care of yourself and I wish you lots of luck!
Hanna, My heart goes out to you, I sat and watched this video tongiht with my daughter, with teats in my eyes. I think about you and your son so often,and being where you are 23 years ago makes my heart ached even more. Only they found her diagnosis and though it wasnt good at least I had answers and I pray you get them as well, but with results that will make Cole better.Please know your in our thoughts and prayers. Keep the faith Hanna and hold him as tight as you can, and love every moment you have, hes precious.
Want to know something eerie. On 12/31 I got up early because we were going to be admitted to the hospital that day to start Coles steroid injections. He would need to be monitored for 24hrs. So I got up to pack and turned on the t.v. which just happened to be on TLC. I wasn't really paying attention to it as I was rushing to pack for all three of us...... but then that exact Mystery Diagnosis came on. It was so weird!!!!! It's always been in the back of my head. But I will definitely have someone checK!
Hanna you are very welcome. I saw a special on discovery health about a child with moyamoya. It took a very long time for the child to be diagnosed as this disease is very rare and it's symptoms are different for everyone. I hope that you get some answers soon. Good luck to you.
Thanks for the support and the suggestions and for taking the time to hear Cole's story. I will definitely ask our Doctor about MoyaMoya disease. Thanks again!
Please have your doctors check your son for MoyaMoya disease.
Acitan
- May 7, 2009 4:17 PM
I cannot give you any insights. BUT I can pray to God that you will be blessed with some proven ones.
May God wrap his arms around you, bless you and yours immensely, and may you know the Peace that only He can give.
My Montage 5/7/09
by
Hanna
:: 13349 views
added 8/5/10 :: last modified 8/5/10
alica - Nov 19, 2009 5:16 AM
You have one amazing son. He is beautiful and I pray that they help you and your husband take care of your little boy....COLE.
I wish that I had some extra money to help. I know that you are not asking for any but I know that the hospital bills alone are outragious. pls keep me informed on cole. I would really appricate that. You may email me at alica_steve2@yahoo.com. feel free anytime.
Alica
sheila - Oct 10, 2009 1:09 PM
Cole is a beautiful little boy. I'm sorry that you have had to go through so much and gotten no answers. I was a Foster Parent and had a child in my home that was very sick. Now she is gone. And I work with kids that have MS and CP it is a very hard thing. But many rewards with these kids. YOu will be in my Prayer's. I pray that you will reach that one person that can help. Don't ever give up. And keep the faith. God Bless You
Hanna - Sep 30, 2009 5:53 AM
Thanks so much for all your kind words.
Check out www.colescause.com
for the latest updates on our journey!
Jim - Jul 21, 2009 6:37 AM
My heart goes out to this family. Our firstborn was operated on when he was six hours old and had three major surgeries before he came home at two months. We learned many valuable lessons about trusting God through these tough time. I have forwarded this site to everyone on my email list and posted it as a link on my website.
connie - Jun 29, 2009 9:35 AM
I just saw your story of your son Cole. He is such an adorable and cute little boy. My heart goes out to you and your family.. Just remember to keep your strength and faith and God will help you through this... He is the Great Physician of all... My prayers are with Little Cole and your family.. May God Bless Cole and your family abundantly
Christina - Jun 28, 2009 11:31 AM
Hi Hanna, We just had a child and we were worried sick after an abnormal 3rd trimester prenatal ultrasound predicted a genetic abnormality that would likely mean developmental delay, balance and mobility problems, etc. However, we were blessed when our son was born because we had a head ultrasound done when he was a week old and the results came back "normal". We were so relieved! Anyway, with your son Cole, I am not a doctor but I did a lot of research during those weeks of worry and it sounds similar to a few of the disorders that I read about, including Usher Syndrome (did they mention that? It involves vision and hearing problems as well as balance and developmental delay - walking, crawling, etc). There is a group of disorders recently linked together and called "The Retinal Ciliopathies". They have found that the same gene mutation can cause a number of different disorders, that are seemingly unrelated. Check out http://www.informaworld.com/smpp/content~content=a782473199~db=all
Brad - Jun 12, 2009 3:54 PM
Our son Seth came down with West Syndrome/Infantile spasms at 6 months of age. It had nothing to do with vaccines or any other external phenomena. I have a brother that has epilepsi that developed when he was 17 and another relative a couple generations back may have had undiagnosed West Syndrome. So It may run in our family much like they suspect Alzheimer's or breast cancer can be. Seth was put on Phenobarbital and Topamax at his diagnosis. We found a good neurologist and we made it a point to both be there for those appointments. It was hard to give our baby the medication orally but we became inventive, to the point he doesn't like apple sauce anymore. He just past his fourth birthday and as another milestone he started using the pedals on his tricycle. The speech is coming along, but he is hold out on his toilet training. We are thankful we have him to share with his brother and sister. God has taught us so much through his illness and patience is a Godly Virtue.
kris - Jun 12, 2009 11:55 AM
ITS THE VACCINES Brain hemorrhaging and retinal hem. are listed on the vaccine package insert as some adverse reactions. It also says if the child crys for more than 3 hrs, is vomiting, having seizures then do not give that child any more vaccines. To do so will create more brain damage. Most doctors do not go by this, they tell moms that its normal for a baby to do this stuff. Alot of babies could be saved from suffering if DOCTORS HAD A BRAIN OR COMMON SENSE. With your next child DO NOT VACCINATE and you will have the HEALTHIEST BABY EVER. All vaccines do is damage the iimmune system and brain.....
dawn - Jun 11, 2009 10:27 AM
hi my name is dawn. i saw ur story about cole. it made me cry. i will make sure to pass on his story. he is so cute. i will keep him in my prayers and heart.
dawn - Jun 11, 2009 10:27 AM
hi my name is dawn. i saw ur story about cole. it made me cry. i will my sure to pass on his story. he is so cute. i will keep him in my prayers and heart.
ANGELA - Jun 11, 2009 7:00 AM
My son's health was greatly challenged although his was not as severe as Cole's. Our first pediatrician was clueless to his problems. The Lord led me to another doctor who had such wonderful insight and helped my child (and I get well). I will be praying for little Cole, as I know the pain of having a child who is not well and no answers as to why. I do strongly believe in Divine healing as well, so I will be praying for total healing for him. I encouarge you to read the Bible and see that this is something that Jesus Christ died for us to have. It says that (referring to his beatings before he was crucified) "by his stripes we are healed". I have little Cole's face in my mind and heart now and will begin praying. I will check back to your sight for updates. Angie
http://rughzoo.webs.com/apps/blog/
Brian - Jun 10, 2009 9:01 AM
I wish you the best.. three consideration to discuss with your pedineurologist if you have not done so already:
1. NEURAMINIDASE DEFICIENCY : http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=256550
2. PKU: although the typical forms are pick up routinly on prenatal screens: odd varients can be confusing and can explain some of chole's symptoms ( ask your neurologist if he can do csf neurotransmittor studies and csf screens for lactate and pyruvate) - this is a long shot but some of the forms of these diseases are treatable and therefore worth testing for.
3. 1p36 deletion, often picked up chromosomal microarray if one has not already been done.
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=del1p36
wishing your family the best.
eileen - Jun 7, 2009 4:20 AM
FIRST LET ME SAY YOUR BABY IS BEAUTIFUL GOD BLESS HIM ONE YEAR AGO TODAY I ASKED MARY TO HELP MY MOM SHE HAD SUFFERED A MAJOR STROKE MOST PEOPLE DO NOT RETURN FROM I ASKED HER TO ASK JESUS TO HELP MY MOM AND I IN RETURN WOULD HELP HER . MY MOM IS HERE WITH ME TODAY AND I THANK GOD EVERYDAY FOR HER I WILL ASK FOR YOU ALSO AND PRAY FOR YOUR FAMILY AND PEACE GOD BLESS ALL OF YOU
Stephanie - Jun 4, 2009 7:42 PM
Hanna...God Bless your lil' boy Cole! He truly is precious and beautiful. I will pray for him, as well as your family, in hopes that they will help your little Angel. What a doll, and such a trooper! I wish all the best!
Heather - Jun 4, 2009 2:34 PM
Hanna,
My name is Heather Long. My son Cal passed away 2 years ago at the age of 5 - undiagnosed. Since then I have been working on ways to help families like ours find the answers they need and get the help that they deserve.
On May 21, 2009, Congressman Carter introduced legislation at my request, that if passed will create an National Undiagnosed Diseases Registry. It is called H.R. 2538 The Charles August 'CAL' Long Undiagnosed Disease Registry Act of 2009.
If this registry becomes a reality, it will help doctors who are managing cases like your son's and mine with other doctors and researchers to help find the answers we need.
I encourage you to call me so I can speak with you personally. I am going to Washington in July and would be honored to share your story with as many of our law makers as I can - with your permission.
My email is cnhlong@att.net
Heather Long
Cedar Park, Texas
Roisin - Jun 2, 2009 9:35 AM
Hi Hanna & family!
I will keep you all in my thoughts and prayers. My little nephew due anytime soon has been diagnosed with trisomy 18, cdh etc..
We are all very worried, as Im sure you all are.
Its a worrying time.
Look after yourselves and your little man.
Roisin Ireland
Renee - Jun 1, 2009 5:27 PM
Hanna.
I have a friend whose child sounds like yours.
Have you ever heard of tuberous sclerosis?
I think you should check into it.
Hope this helps,
Renee
Gerri - May 28, 2009 12:03 PM
please don't give up hope, Doctors were not sure if my daughter would ever sit up, walk or crawl. She did not reach milestones at the normal time at all, hypotonia was part of the cause no real diagnosis for all her problems. Yet she walks, talks somewhat at five she is developmentally arount 3.5 years old.
kelly - May 28, 2009 10:06 AM
Hi Hanna and family! Watched your video...
had to share that Cole is not as unique as you might think - unfortunately.
Please check undiagnosed-usa.org and consider joining our message forum.
Kelly-Ann
Bruce - May 21, 2009 3:31 PM
Hannah and Chris -
Saw the wonderful but very sad video of your son Cole. My partner Rick and I will do everything we can in forwarding this video to everyone we feel might be able to help Cole. Of course, we can not promise anything except our thoughts and prayers to help ease you a bit on your quest for a cure. Please let us know, if possible, of any progress that you might have found.
My name is Bruce and Mike Shaughnessy and Judy Cray are my niece and nephew. Let them know we will do what we can for Cole and our fellow Vermonters up there in B.F.
God Bless
Bruce and Rick
Cindy - May 16, 2009 8:06 PM
I too can only offer your family my family's prayers and hope for a happy life for Cole. God has delivered to you such a beautiful boy to love and care for. He has given him to you because he knows that you will give him every chance he deserves to get better & live happily with your arms wrapped around him. Just remember you are all not alone in this fight, God is walking with you all of the way. Keep fighting for him as he deserves all the love you can give him. Cole is wonderful and knows that he is so very loved by you, your family and friends. That Hanna, is what will get him through this. Please keep us posted as we would love to hear how things are going with Cole and your family. cpingel@sbcglobal.net.
Katie - May 15, 2009 2:11 PM
Hanna, I just got internet access today and watched your video of Cole and it truely touched my heart! I'll be sure to forward it on to everyone in my address book! Good luck and you guys are in my thoughts often!! All my prayers to Cole, your beautiful little boy!
-Katie
Nikki Moore - May 15, 2009 12:30 PM
she will be 3 in august, and we are in nh
Nikki Moore - May 15, 2009 12:27 PM
Hanna, My daughter is very similar to Cole, I would be glad to share with you the information I have rcvd in recent years, Gracelyn is now 2. A friend of mine fwd me this link because they thought of my daughter, however, my daughter has a diagnosis, but I wanted to introduce a few things to you that helped us get the diagnosis, it is a new test, and is only done when you scream and yell, but is not painful, just simple bloodwork... you just have to kick & scream at the drs to get them to do it! :) ! My daughter is 3 with Hypotonia, Eye disorder, seizures, respitory issues, dysphagia etc... the list goes on! I loved your video... I hope to get in touch my email is mommy2gracelyn@gmail.com
Peggy - May 14, 2009 3:07 PM
Cole is a beautiful little boy... My heart and prayers go out to you and your family. Don't loose faith.. God has a plan for everyone!
God Bless you all ,
Peggy in New Hampshire
david - May 14, 2009 1:17 PM
I can only offer you our prayers, please know that you and your family will be in our prayers daily.
Warm Regards,
David Pia
Trumbull, CT
cynthia - May 14, 2009 10:34 AM
hanna,
I could not imagine what you are going through and it angers me that your poor little boy has to go through this. I will keep you in my prayers always. My god bless your little boy
Katie - May 13, 2009 1:09 PM
Hanna,
I was forwarded your video by a friend and I was touched and moved beyond words. I felt an immediate connection with your son because he was born on my daughter's second birthday. My heart goes out to you, your family but of course most especially to your precious Cole. I am not in the medical field but did send this to a friend who is a neurologist. I don't know if these are things you have already explored, but I wanted to send it along just in case because as you said, it only takes one person. Here is what he said:
They need to see a Pediatric Neurologist, if they have not already. It's sad, but the kind of thing that we see from time to time, unfortunately
The symptoms this child has are all potentially due to a number of different causes. One possibility is a type of muscular dystropy called FSH or FSHD (fascioscapulohumeral muscular dystrophy), although infantile spasms are rare in that condition.
I hope this may be of some help!
Sincerely,
Katie Short
michele - May 13, 2009 12:30 PM
He is your gift from G-d. Having a daughter with an undiagnosed syndrome with so many health problems to challenge the medical field too, I pray for you and will pass this on to EVERYONE. G-d bless you and your family. Whatever the master plan is.....Michele
Rosemarie - May 13, 2009 7:45 AM
I pray that you find a cure for little Cole...Your whole family is in my thoughts and prayers. Life is very precious...it is wonderful to see his smile...I hope that he doesn't have to endure much more pain in his life...I will forward this on to everyone I know. God Bless you all!
jennifer - May 12, 2009 12:57 PM
I am praying for you and your baby. He is absolutely beautiful and it breaks my heart to see him and you endure so much pain. but he keeps smiling!!! He must have some awesome parents!!
Hanna - May 12, 2009 5:35 AM
Debbie,
Thank you so much for your very kind words. They really mean alot to us! We really appreciate your support and cannot thank you enough for helping us share Cole's story.
Kristen,
Thanks for your support and for taking the time to watch our video,
Jane,
Thanks for watching and forwarding Cole's video. He has hard his NDP and Frizzled 4 gene tested for a Norrie disease as originally it was suspected he might have FEVR. But all testing came back normal. I do know that whatever Cole has differs from FEVR in that not only does the fluid leak and build up behind is retina but it is also building up between the individual layers of his retina itself.
We are hoping to get more genetic testing started soon.
Thanks again everyone!
Jane Johnson - May 11, 2009 6:41 PM
Hi, I am a NP that saw the video. Talked to a friend of mine and he sent this comment.
Jane,
Cole could have an NDP related genetic disorder or Norrie disease (see links below) and genetic testing is available.
Greetings,
Jose E. Martinez, MD
Clinical Genetics
University of South Alabama
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=norrie
http://www.genetests.org/servlet/access?prg=j&db=genestar&site=gt&fcn=d&id=8888891&qry=2456+1136&res=nous&res=nointl&key=2FXGaXnRpU0qt&show_flag=c
Kristen - May 11, 2009 2:54 PM
OMG goodspeed I really feel 4 u and ur family
Debbie Golt - May 11, 2009 10:33 AM
Hi! Hanna-we haven't met, but I work w/ your sister @ the Retreat & she talks alot about Cole[in a very loving & "sisterly" way:) ]. Cole is such an adorable, cute little boy. I wish I had an instant "fix me" button,or knew something I could tell you for sure- that wasn't too "cliche-like", that I could say to you. I will tell you this, for sure-as this is something that I do know, & that is if your at all like Emily-you'll NEVER give up, as well you shouldn't. This video is wonderful & send it everywhere & anywhere that will possibly get it at all. You & your family will forever be in my thoughts & prayers. I will do my part as well, to pass this on to as many people, friends & family that I can. I hope we can meet someday. I know that the few tears I've shed, in just watching this amazing video story are probably nothing compared to what you have experienced to this point. I really do believe that we are not given in this life- more than we can handle. Stay strong & keep focused!!
Hanna - May 11, 2009 7:06 AM
Renee and Jeanne,
Thank you both so much for your kind words and support. Cole has definitely taught us so much in the last 14 months. We know not not to take anything for granted and to definitely cherish what we have. He is such an inspiration and we are so lucky he chose us as his parents.
Thanks again for taking the time to listen to Cole's story and help us share. We appreciate it more than we could ever express through words!
Renee - May 9, 2009 5:06 PM
Hanna, I cannont tell you how very sorry I am for all you and your family has gone through...I hope and pray that you get the answers that you are looking for. This is an absolutely heart-wrenching story and it certainly makes me appreciate what I have. I went through many miscarriages before I had my second daughter, who is now 5...I never wanted to give up because I knew someday I would have two beautiful red-headed girls. I got my wish, but it doesn't make me take one day for granted. I hold them tight every night and know that I am truly blessed. My heart goes out to you and your family. I hope in the near future you have a prognosis and it is treatable. Cole is such a precious little boy! Take care of yourself and I wish you lots of luck!
jeanne wetherby - May 9, 2009 4:37 PM
Hanna, My heart goes out to you, I sat and watched this video tongiht with my daughter, with teats in my eyes. I think about you and your son so often,and being where you are 23 years ago makes my heart ached even more. Only they found her diagnosis and though it wasnt good at least I had answers and I pray you get them as well, but with results that will make Cole better.Please know your in our thoughts and prayers. Keep the faith Hanna and hold him as tight as you can, and love every moment you have, hes precious.
Hanna - May 8, 2009 12:13 PM
Want to know something eerie. On 12/31 I got up early because we were going to be admitted to the hospital that day to start Coles steroid injections. He would need to be monitored for 24hrs. So I got up to pack and turned on the t.v. which just happened to be on TLC. I wasn't really paying attention to it as I was rushing to pack for all three of us...... but then that exact Mystery Diagnosis came on. It was so weird!!!!! It's always been in the back of my head. But I will definitely have someone checK!
Jamey - May 8, 2009 11:09 AM
Hanna you are very welcome. I saw a special on discovery health about a child with moyamoya. It took a very long time for the child to be diagnosed as this disease is very rare and it's symptoms are different for everyone. I hope that you get some answers soon. Good luck to you.
Hanna - May 8, 2009 10:02 AM
Thanks for the support and the suggestions and for taking the time to hear Cole's story. I will definitely ask our Doctor about MoyaMoya disease. Thanks again!
Jamey - May 7, 2009 6:24 PM
Please have your doctors check your son for MoyaMoya disease.
Acitan - May 7, 2009 4:17 PM
I cannot give you any insights. BUT I can pray to God that you will be blessed with some proven ones.
May God wrap his arms around you, bless you and yours immensely, and may you know the Peace that only He can give.