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:

(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.


Clare said...

Simple joys indeed. They really can't be beat.
And the video of samuel giggling is just a heart lifter. I've signed their guestbook with a 'happy birthday' greeting.

Clare said...

Oh, and I didn't get your other reply, but I did get the one you left on my blog.
Thank you for your concern and understanding, I really appreciate your prayers.
Bless you!

Oh, and I have been making use of some of the links in your sidebar, which are very useful, thank you!

Field Daisy said...

Every little baby is such a precious gift from God. You can feel the love flowing from mama to baby and baby to mama.

Anonymous said...

May God help you with your baby! We pray that He makes it easy for you and Samuel. Long life to the miracle baby!

Anonymous said...

On March 27 2010, God sent a special blessing to our family. Megan Jewel was born 2 mths early with Thanatophoric Dwarfism. Gods Grace and Love have been so comforting through the last few months. My arms ache to hold her....but she is now in the Arms of Jesus, being sung to by the angels. Forever free from pain .
May God wrap his arms of strength around you. I know you cherish every moment you have with your son! God bless you all!

Anonymous said...

wow,that is truly amazing! i am curently pregnant with a baby girl who has been diagnosed with this disease and to see a child who has survived all odds is great inspiration and hope to me and my baby thank you... god bless and happy birthday samuel

Anonymous said...

My wife and I just had a baby girl 12 weeks early with Thanatophoric dysplasia. This site literally made me tear up with hope. As I write this we're still in our first 24 hours so we've yet to see our Evelyn's true strength. I will keep Samuel in my prayers. Thank you for posting this story. I'm sure it has given countless people hope.

Clare@ BattlementsOfRubies said...

Anon, Praying for you and your wife, and especially your little Evelyn. May your hearts be at peace .

Anonymous said...

Clare - I'm sorry to say that our precious Evelyn lost her battle and left us this afternoon. She fought till the end like a true champion. She was loved by all who knew her during her short time. I hope handsome Samuel sees many, many more birthdays.