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


Mrs. N. said...

Deeny, he is beautiful ( yes,boys can bebeautiful too!!) I had cancer at age 14 and also got a "wish" from the Make-a-Wish fondation. They are a wonderful foundation. I wanted a cruise to the Bahamas! And that's what I got, all expenses paid! I hope he had a wonderful time.

Mrs Flam said...

Its so wonderfull to see one of gods blessing ... He is so happy , I can only imagine how his face must have lit up , my own son is a bit younger , but I could see the same happiness on his face.

Thank you so much for sharing

Anonymous said...

Looks like he is having a great time. You can see in his eyes that he is loved and knows how to love. What a wonderful blessing.

sadie said...

i had i beautiful son named leo who had thanataphoric dwarfism but he passed away an hour after he was born i was told that he would not survive and told if i put him on respritory that i was making it harder for him i wish i would of stuck with it i told them i wanted it but they pushed me not to im so happy that your little boy sam is ok and there are chances 4 babies with this condition not that i knew at the time i would love to stay in touch with u 2 c how he is all my love is with u and sam x x xall my love sadie x x x could u stay in touch please email

Matt Ripp said...

God bless him and you and your family! Beautiful boy.