Osteogenesis Imperfecta Support Group

I am the mother of a son who was not supposed to live more than 3 days . He is now 39 years old and married . He drives his own truck . Owns his own business .There are some things he can't do but many more he can do . He has been a delight and blessing in our lives and an inspiration to all who meet him. He has always been happy and a comic. . Please take a look at my profile and check out Rusty's pictures and other of my family . There are some old journals about him . I have known several other kids and adults with OI through out the years. To me they are amazing. i am wishing you and your son all the blessing God can send. I know first hand the concern and worry you must feel but take it from me your son will be a blessing . And he he will tugg at your heart very hard but be brave it will all be worth it . He is a precious gift from God. He will bring you so much joy and he will make you laugh so hard. and he will bring tears to your eyes but still you will smile. I will be glad to answere any questions .

just wanted to share this with you it is the word to a song.

All Shapes and Sizes
by Chris Warren
( album: Lullaby: Mama Will Rock you To Sleep)


The baby was born with a burden ,
Each day was a struggle to live
But mama said not to feel sorry ,
That no child had more love to give

That God make angels in all shapes and sizes
and each has a purpose to be apart of our lives
God make angels in all shapes and sizes
and this little angle is mine.

The first day of school was a nightmare.
Some of the children were cruel.
So wrote the teacher a letter.
and ask her to teach them in school,
That God make angels in all shapes and sizes,
and each has a purpose to be apart of our lives.
God make angels in all shapes and sizes,
and it is naughty to make angels cry.

And the children remembered
the lesson they heard
that everyone is special
and they spread the word.

That God make angels in all shapes and sizes.
And each has a purpose to be apart of our lives
God make angels in all shapes and sizes
And it is naughty to make angels cry.

God make angels in all shapes and sizes.
And each has a purpose to be apart of our lives
God make angels in all shapes and sizes
And it is naughty to make angels cry.



This little lullaby spoke to my heart. because not only do I have special angel of a tiny size but I know and believe we have a duty to teach children that God indeed does make angels in all shapes and sizes. And we need to be nice to everyone and that includes all the special little angels that look different than they do. And we need to teach children that each one has a purpose to be apart of our lives.
God make angels in all shapes and sizes
And it is naughty to make angels cry.

I hope that all parents make sure they teach this lesson to each of their children.


To see my special little angel see my picture album on DS . There are a few pictures there. He is all grown up now but still a little angel in my eyes and in Gods eyes too . And like this song says there were cruel people in the world that did not see him as God's angel . His own strong resolve got him through many times of cruel words and names and sneering looks from some people. I will say that he met 1000s more nice kind people than naughty ones. And that helped so much . With the love of his family and friends and nice people and God's love, He turned out to be a kind gentle man. I am very proud of my son Rusty. He takes a licking but keeps on ticking.

More About my son Rusty.s Condition ( Osteogenesis Imperfecta
Wednesday, January 14, 2009 This is added information on the a condition, my 38 year old son was born with, called Osteogenesis Imperfecta .



There are many adult OI people living in their 60s today. OI itself is not a fatal condition if you can get past about 3 years of age. Of course if there is a bad fall and maybe a bad head trauma then yes as with anyone it can kill you . Rusty at age 28 was in a very bad rollover car accident, crunching all four sides of his Van, flipping 4 times airborne and coming to rest on top of a port-a-can and hitting a giant freeway pillar supporting the over pass. Anyone could have died in that accident, When his big brother ( wrecker driver) got to the accident site and saw his brother 's car , His heart almost stopped. He just knew in his heart that his little brother was dead. He though no one could survived in the van BUT Rusty was not dead, Plus he really was not hurt all that bad considering the type of accident . One fractured arm and one fractured leg.



As the OI child get older after puberty , he stops breaking so easy and then in old age starts breaking again, just like any old person does. Deafness can and often happens in young adulthood . Rusty has hearing loss in one ear . It can be corrected with surgery by replacing the tiny fractured ear part with an artificial one. Rusty has not had this done yet. No $$$ . NO insurance and MOM is POOR :)



There is another remarkable young OI man age 28 I think. Sean is a great motivational speaker. You can hear and see Sean Stephenson on Youtube at this address .He looks a lot like Rusty and is about the same size. Sean is cute and has a fun personality and is funny, like Rusty. He also is a very good speaker and has alot of good advice. Look for all his speeches and hear his life story . He will motivate you and make you cry and laugh. http://www.youtube.com/watch?v=nfr...



Every OI person has a different life and experience with OI as we all have. Not all doctors have heard of this condition and even if they have , they know very little about it and have never seen nor treated a person medically who had it. This is a rare condition. I am not sure how many OIs there are in the USA at this date. But 38 years ago there was about 50,000 in the USA. That may sound like a lot but it is not. and then remember there are 4 or 5 types of OI. Rusty has the most sever type and rarest form. Rusty's OI condition is the type that is caused by a spontaneous mutation of genes . It started with him in our family, No other cases of OI are in our family history. Unless Rusty was to father a child there is very little chance of another OI to be born in our family. Rusty could father a child with or with out OI and that child could have a much different type of OI than Rusty and be affected more or less severely.



I do not give this information about my life or Rusty"s life to get sympathy . I do it only as a way of educating the public and to give encouragement. To show you that life is good even if you have problems and disabilities and to show you that no mater what you face in your life you can be happy and successful . And to tell you, "Where there is a will there is often away " as Sean and Rusty would say , "Don't cut yourself short, Reach for the stars. You do not have to do it the same way everyone else does it. Find away that will work for you.:

the birth of son # 2
Sunday, January 4, 2009 | A General Update story let me say that there are not enough words in ( Mark this entry as ) this entry is inspiring, positive, happy. sad, tragic, painful. educational , and heart worming. life experience of triumph. over coming a new life challenge.



After the first big challenge in my life (dealing with being dyslexic) I guess the next big problem I had to face was the birth of my # 2 son. So far I had live in a world with no problems of the any great magnitude. But then I had a Doctor tell me that my new baby boy had only a few days to live. Ouch double ouch!

I had always said, to people who ask me what did I want a boy or a girl? I want a what ever Gods give me. Most people say (As long as it is healthy I don’t care). I always wanted to ask what do you want if your baby is not healthy. And then my baby son Rusty was born 39 years ago. Now the question was even more relevant to me. I still did not care if he was a boy or a girl, or if he or she was perfect or not healthy. He was still a gift from God. He was my baby and part of me. He was put in my care. Even though finding out that he might not live and if by chance he did live he would be blind, deaf , never walk never talk and be extremely retarded and be in a lot of pain an suffer many fractures throughout his life. WOW what a blow for a young mother to have to handle. How? Why? What did I do wrong? And what do I do now?

My answer was to love him, care for him and pray for him and pray for me. Lord, give me what ever it takes to care for the baby. Rusty lived past the 3 days. Then a Geneticists call to us as we were looking at Rusty in the incubator in the Intensive care Neonatal unit of the hospital. I need to talk to you he said. Off we went to his office. The most wonderful man giving us very good news but bitter sweet news. He first explained Rusty’s condition (brittle bone) or Osteogenesis Imperfecta Congenita. A connective tissue disorder affecting the bones mostly. Then words like dwarf, short stature, bones that break very easy, high intelligence, happy, lung infection, blue sclera, bleeds easy, bruise easy, surgeries, cast, splints, body braces, wheelchairs, skeletal deformities, normal life expectancy, school. A no, no for three year old brother. BUT NO retardation, no blindness, no deafness. He said you have a breakable baby. You will not be able to handle him as you would a normal / average baby. He can go home and be cared for at home for the most part. With a lot of love and extra special tender loving care. He will with, God blessing be a happy baby and bring you much joy. WOW bitter sweet as I said. The doctor was so kind and understanding. He was clam and reassuring .He was the first one that gave us any hope and positive thoughts. Most other doctors were grim with no hope and cold hearted. Blunt with almost a repulsed attitude.

Rusty was small in size and almost 4 week early. He

He had many fractures occur during birth and many before his birth, including spinal fractures and skull fractures, rib fractures. His arm and legs and feet were twisted and bent every way but the right way. His breastbone was sunken in and pressed against his heart. He spin was twisted every way but the right way. He developed pneumonia and was jaundice.

His first Doctor made the decision to limit his medical care to only feeding and bathing. No meds no other medical care. Telling us our baby is just too messed up and if God wants him to live, he will live.

Rusty health at this point was very poor.

Another Angel of mercy came forth in the form of my husband’s cousin, Dr. Womack a well known pediatric specialist at Texas Children’s Hospital in Houston. He was right next door in the next hospital. To make a long story short, Dr. Womack took over Rusty’s care and called in many specialist. One day Dr Womack called us and said, “Come get you boy.” Oh happy day!

It had been a long 4½ weeks. Daddy and Mommy went to got their tiny breakable bundle of FREAR!

I was so happy but I was so afraid, my heart was beating so fast. I felt like I was going to pass out as we drove to the hospital to pick up our son and take him home. As I reach down and put my hand under his tiny head I got sick at my stomach. His head felt weird, there was like no skull. His head was gooshy and mushy. I took a deep breath and must have been screaming a silent prayer. “OH God. Help me!” My fear went away as I looked at Rusty and picked him up very slowly and stared dressing him oh so very carefully (NOT waiting for the nurses to show me how.) I knew how. God gave me the ability to do it. And we came home. The next 39 years we will get to later. That is all for now. Stay tuned for more, right after these breaks . LOL Did I say breaks?

Yes I did.

Osteogenesis Imperfecta Foundation web site you will find a welth of information here
http://www.oif.org/site/PageServer

http://www.youtube.com/watch?v=Xoy...

Sean Stephenson: Living large in a 3-foot frame
Sean has OI 2

http://www.youtube.com/watch?v=-HB...

http://www.youtube.com/watch?v=nQ7...

http://www.youtube.com/watch?v=mo6...

I am the mother of a girl where the doctors do not know if she is a type 2 or 3. She is 12 years old now ! We know 2 more families in Denmark who were told their children would not survive either and they are 5 and 13 years old. So hang in there Bennett might stay much longer than the doctors predict :-) About clothing go look at Maries site www.marie-med-oi.dk - it has pictures of special made clothes my mom has made for her. If Bennett cries a lot - do you give him any painkillers ?as he could have fractures ... you have to get someone to show you how to put on a bandage because that will help with the pain. Please feel free to ask anything you think I can help with. Believe me - it do get better !! and easier !! I bet he is already a charming boy - when he is not crying ,,,