Tuesday, October 2, 2012

Another Former Non-Denominational comes home to the Church

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Tuesday, August 14, 2012

Intubation and Life on a Ventilator is NOT Torture or inhumane

     One of my, distant friends posted a link to this article on Facebook, and this is really her view and unfortunately the view of so many people and most of the medical establishment. I have yet to figure out why intubation/ ventilation is considered an extreme measure. It doesn't seem extreme or all that painful at all to me. My nephew Samuel doesn't seem bothered by it at all from what I can tell. It just seems like it would be a ton of work for mom and dad. The article wants to stereotype parents who fight for their kids against the medical establishment as all misguided religious zealots who are hopelessly wanting a miracle. I realize every case is different but I also see bea
utiful children that are enjoying life with smiles and giggles that wouldn't be here today if they weren't given that chance. My thinking is why not try ventilating. They can die on a ventilator too, but maybe they won't and maybe miracles can still happen. This article irritated me. I do know there has to be a balance and each case is different and only the parents and Drs as a team can determine the best course of action and hopefully work together for the best outcome but I think in the case of Thanatophoric dysplasia it definitely is an uphill battle for parents against the medical establishment. It is so awesome to actually see what these little guys can achieve when given a chance. 


The article I was upset about is here: 
Parents who believe in miracles 'torturing' dying children, doctors warn

      My sister-in-law would be considered one of those religious zealots mentioned in the article who fought the medical establishment to intubate Samuel. He was born a Thanatophoric dwarf which is a condition considered incompatible with life. 
Very few of these kids have been allowed to live because this is the viewpoint of the medical establishment and in many hospitals and their Dr's will refuse to intubate these children and most parents will not put up a fight. My sister-in -aw is now writing a book about her ordeal Called a "Miracle in My Living Room"

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Tuesday, July 24, 2012

Thanatophoric Dysplasia Survivors

Hi, My sister-in-law just started a public Facebook Group for Thanatophoric Dysplasia Survivors which my nephew is a survivor. He will be 7 year old next month. http://www.facebook.com/groups/356242194456724/

Her desire in creating this group is to provide hope and inspiration to families who are facing a diagnosis of Thanatophoric Dysplasia (TD). Though you will hear from the medical community that this diagnosis is "not compatible with life", our children are survivors. Thomas, Luke, Christian, Charlie and Samuel are proof that miracles happen. I have made this an open group with the hopes that many will see the stories of these amazing children. For those of you who are pregnant with a diagnosis of TD, please feel free to ask questions. I am sure the other moms of this group will be happy to share their experiences. To see pictures of my son and read my journal, go to www.caringbridge.org/visit/samuelmann.



Samuel's 7th Birthday




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Wednesday, July 18, 2012

Surviving with Thanatophoric Dysplasia- A Very Happy little kid-


Surviving with Thanatophoric Dysplasia- A Very Happy little kid- 


   Here are all my past posts about my nephew who is a Thanatophoric Dwarf in one place. He is still doing great and about to turn 7 years old in August. Samuel's mom now has her own blog about Samuel at http://hopeseed.wordpress.com/



Monday, March 5, 2012

Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 6 years old

Samuel is my nephew his mom is my sister-in-law Evelyn. Our husbands are brothers.


Samuel's Mom now has her own blog at:

  http://hopeseed.wordpress.com/



Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 6 years old!

This is Samuel and one of his teachers.

Update Samuel Turned 6 on Aug 2, 2011 and is still doing awesome things. He now is in school, well the teacher comes to him, but still really cool. He uses switches to operate his computer and toys.






Other More Recent Pictures from about 2009 to present (11/2010) not in any order.


This is Samuel and his mom Evelyn (Evelyn is my sister-in-law and Samuel is my nephew)




Isn't he Darling!!




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8/1/2008 Update on Baby Samuel
He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only 3 have ever been known to survive into early childhood. Well Samuel is going to make number 4. Samuel Turns 3 years old on Saturday and miracle of miracles he is breathing on his own off the vetillator for short periods of time. Another thing, according to doctors he was never suppose to be able to do. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 3rd Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.
This is Samuel.
Hope you enjoy it and laugh along!!

Surviving Well on a ventilator, Surviving Thanatophoric Dysplasia, Surviving with Ventilator not painful, Thanatophoric Dwarf, Living With Thanatophic Dysplasia

Thanatophoric images, Thanatophoric pictures, Children living with Thanatophoric Dysplasia, thanatophoric dysplasia type 1 survivors
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Tuesday, November 10, 2009


Chose Life Story, Samuel living with Thanatophoric Dysplasia


As most of you know my nephew Samuel was born with a condition called Thanatophoric Dysplasia which is a condition that is considered incompatible with life. My Sister-in-law and brother-in-law went against Doctors wishes and did not have a therapeutic abortion. A few weeks ago Spirit FM 90.5 aired their story This is an audio file of that story that aired on Spirit FM.

Here is the audio Story/ Interview that aired

 

Here is a link to some pictures of my nephew Samuel
Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel's Caring Bridge Website


Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia, Living with thanatophoric dysplasia, surviving thanatophoric dysplasia, living on a ventilator
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Friday, January 16, 2009


Update: Sam a Surviving 3 1/2 year old Thanatophoric Dwarf has Fun at Sea World & Disney



Update: 1/16/09
Hi Everyone,

This is another Update on the wonderful and amazing life of Samuel who was born with Thanatophoric Dysplasia. He is surviving, thriving, full of life and doing fantastic. Here he is in his shades on his trip to Disney & Sea World. The wonderful Make A Wish foundation granted this wish for Samuel and his family. I want to let families know that if they ever have to face the choice of whether to put their child on a ventilator that these children do not live in pain and do have a very wonderful quality of life. I don't always think doctors give parents all the information necessary to make an informed decision. I think doctors in many cases scare people away from life saving procedures especially when they feel there is supposedly no hope. I want to let parents know they do have options. Choose life.

He is a giggly, happy toddler who does interact with his environment.
Samuel and His Mom at Disney & Sea World in Orlando Florida
A Wish Granted to Him By The Make A Wish Foundation

Samuel's Website
Sign his Guest book

A Sampling of Pictures From Samuel's Trip













Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia, Living with thanatophoric dysplasia, surviving thanatophoric dysplasia, living on a ventilator
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Saturday, September 18, 2010


Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 5 years old!

Update Samuel Turned 5 on Aug 2, 2010 and is still doing awesome things. He now is in school, well the teacher comes to him, but still really cool. He uses switches to operate his computer and toys.






Other More Recent Pictures from about 2009 to present (11/2010) not in any order.












_______________________________________________________________________





8/1/2008 Update on Baby Samuel
He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only 3 have ever been known to survive into early childhood. Well Samuel is going to make number 4. Samuel Turns 3 years old on Saturday and miracle of miracles he is breathing on his own off the vetillator for short periods of time. Another thing, according to doctors he was never suppose to be able to do. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 3rd Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.

Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia



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Saturday, August 1, 2009


Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel is my nephew his mom is my sister-in-law Evelyn. Our husbands are brothers. This was an old post. Samuel Turned 6 in 2011 and his mom now has her own blog.


Samuel's Mom now has her own blog at:

  http://hopeseed.wordpress.com/




(new update: of 11/10/2009 A few weeks ago Spirit FM 90.5 aired their story. Here is the audio Story/ Interview that aired)

Yeah! Another Birthday- I can't believe it has been another whole year!!

For anybody new-- here is a little information about Samuel :

He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only very few have ever been known to survive into early childhood. Samuel will turn 4 years old this Sunday and miracle of miracles he is breathing on his own off the ventilator for short periods of time. According to doctors he was never suppose to be able to do that. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 4th Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.

This is Samuel.
Samuel with his mom


Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia



Boy I'm tuckered out. Just too much excitement!

Hey you-- get down on the floor and play with me.

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Monday, July 28, 2008


Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 3 years old!


Samuel is now 6 years old as of August 2011 

Samuel is my nephew his mom is my sister-in-law Evelyn. Our husbands are brothers.

Here is a link to my Sister-In-Law's New blog as of March 2012

Samuel's Mom now has her own blog at:

  http://hopeseed.wordpress.com/


Update Samuel Turned 5 Years Old on Aug 2, 2010 and is still doing awesome things. He now is in school, well the teacher comes to him, but still really cool. He uses switches to operate his computer and toys.





More Updated Pictures: From 2009 to present 11/2010 not in any order














(new update: of 11/10/2009 A few weeks ago Spirit FM 90.5 aired their story. Here is the audio Story/ Interview that aired) 



Click Here to Read A News Article on Samuel and Watch A video done by Catholic News Agency
Checkout Samuel's Newest Update 1/16/09 His Trip to Disney & Sea World

Update on Baby Samuel
He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only 3 have ever been known to survive into early childhood. Well Samuel is going to make number 4. Samuel Turns 3 years old on Saturday and miracle of miracles he is breathing on his own off the vetillator for short periods of time. Another thing, according to doctors he was never suppose to be able to do. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 3rd Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.

Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia Miracle Baby, Surviving with Thanatophoric Dysplasia, Thanatophoric Dysplasia, Thanatophoric pictures, Thanatophoric Dwarfism



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