We invite you to write about your child here.

Hello, my name is Katie. I am so sorry to hear of your loss, but how lucky you were to have that precious time with Tristen when he was born. I hope you can find answers to your son's skeletal dysplasia. I lost two daughters to SRPS type ll, which means their chest, long arm and leg bones do not grow. It's a fatal disorder because the chest does not allow the child a chance to breath. The first time around the Drs. didn't know what they were looking at and never gave us a lot of answers or a true diagnosis. Shortly after we were introduced to Dr. Krakow at Cedars-Sinai in California. I pray that you find peace and answers on your journey of mourning and healing. Thank you so much for sharing with us and please let us know what the autopsy shows.

Hello everyone.
I'm Mary. My husband and I lost our son, Anakin, on June 1st. He was 34 days old. He was born with Thanatophoric Dysplasia Type 1 at 41 weeks on April 28th. We had no idea there was anything wrong until he was born via c-section. We had no idea there were even such things as lethal skeletal dyplasias. His website is http://anakinssong.com. Feel free to read all about my baby boy. The site includes everything from my pregnancy, his birth, his life, his death, our reflections, information about the memorial we started, etc...

We've been to see a geneticist. He assures us that TD is 99.9999% random and the chances of our future children having TD is <.00000001%. We had read and heard that before but I needed to hear it from an expert.

Since having Anakin, I have talked to several families with children that had/have TD. It has been a comfort to talk to others who understand, especially those who've had more children who were perfectly healthy.

It's been just over 4 months since we lost Anakin. We feel every second of it, but we're surviving.

Hello everyone,
My name is Barb, and I would like to tell my story as a grandmother. My grandson is Luca John. I know the pain of losing a grandchild so I can only imagine the pain of losing a child. Nov.10th, 2006 is a day I will never forget. I was with my daughter and my son-in-law when Luca was born. I never felt so helpless as I did that day, watching my child and her husband go through the pain and the tragedy of losing there son. The Doctors said he would probably not be born alive but the were wrong. Luca lived for an hour and a half and he gave us a life time of love in that short time. His loving parents, both sets of grandparents, his uncles and aunt were all with him when he passed, and I know he felt our love for him as well. They say that out of every tragedy some good must come. Luca is honored everyday by is parents who immediately started the Luca John Foundation so that they could help others who have lost a child to Skeletal Dysplasia. Watching my daughter and son-in-law go through this with there faith and love for each other has taught me a great deal. Luca has two healthy and beautiful brothers who we are so blessed to have in our lives. They will grow up knowing they have an angel up above watching over them. So as a Grandmother who loves her little angel as all of you love your children, I pray to God that through research we can one day find the gene code that is responsible for Skeletal Dysplasia. Until then, we will fight to stay strong. My thoughts and prayers go out to you all. To my son-in-law and daughter I love you and gain strength from you everyday.

I have a story i'd like to share about my beautiful son,one of god's special childern'the kind few of us ever get the honor to know.my son was born on nov.19th,1985. He was born with Down Syndrome. His father and I were not expecting news like that since we were only 17 and 20 when he was born. His name was Bryce William. Bryce recently passed away on his 24th birthday,nov.19th,2009. A victim of H1N1.
He had been sick for only 3 days and his little brother,michael was also sick.Michael was violently ill with fever and vomiting and diaherra and it was terrible. Michael was 5 years old. Bryce was also sick with the same symptoms but didn't seem to be as bad. Bryce,because of his down's never learned to speak,he was never able to tell us anything about how he was feeling or what he was thinking or if he had a toothache ora headache or anything.He lived his entire life in silence.24 years and we've never had a verbal conversation with him.We took comfort in learning,from him, that he did understand simple things.tiings like--do you have to go potty?,are you hungry?,please go turn the light off for me,do you wanna go bye-bye?just simple things,but that was ok because he gave us more LOVE and brought sooo much beauty into our lives and the lives of our other 4 kids which we had after him,that i can't even gegin to describe the deepness of our loss.I took him to the hospital on nov.8 because I could hear congestion in his chest and I thought they'd hook him up with some antibiodocs and send us on our way,but instead they said he has pneumia.That started the next 12 days of watching our son fight for his life with more courage than I have ever seen,his and ours.they ended up comatosing him,respirating him,cathater,chest tubes,paralization (by them) and told us there was no hope. that he was basically dead and to pray for a miracle.anyway ,to make a long sad story short,he died 12 days later,with his father and I by his side,holding his hands,hugging him and telling him how honored we were to be his parents.It's been 2 months now and I miss him soooooo much, I can't stand not being able to see him,to take care of him like I always have and to feel his arms around me giving me those big bear hugh like only he could.My house has become a shrine to him.Sometimes I feel like i'm living in some sort of a trance,I' here,but i'm not kind of thing,My beautiful angel has gone to heaven and I don't want him to be gone.I miss him not being here with me everyday.I can't believe he's gone,it all happened so fast right out of the blue and now I don't know what to do.I just want him to know that I loved him with all my heart and he was such a beautiful boy and god do I want him here soo bad.We had him cremated,due to lack of money,so I do have his remains here with me and I talk to him alot and I put up pictures of him all over my house and I try to be strong and sometimes I am ok,I don't want bryce to see his mommy cry or know that she is hurting,he never liked to see anyone cry or yell or anything bad or negative,he was all about LOVE and HAPPINESS and SMILES and JOY.and I miss him eith every ounce of my being.

if you would like to email me,please feel free to at brycewilliam24@yahoo.com