Bryson's Blog

Living with Trisomy 13

Tuesday, January 01, 2008

Happy 2008

I am so thankful for our blessings in 2007. We look to 2008 as being a year of many firsts for Bryson. He is healthy and keeps changing into this playful, funny fireball of energy. To those who thought he would die inside a week, I say, "See?, God has a plan for this little boy." He is here to teach us all not to expect what is the norm. Expect the unexpected!

To those of the medical community and those who write your medical journals, may your minds be kept open to give your patients and their families the benefit of any doubt about what Trisomy 13 is and ALL of it's possibilies. Be sure that when you inform a family of the diagnosis prenatally or as in our case after birth, that you also tell them the truth about the survivors. Tell them that there are many of them and that with the proper care and treatment which should be made available to them, the possibilities are endless!

We have so much yet to learn about the wide spectrum of Trisomy 13. Why are some children mildly effected and some have the worst possible case scenarios? In any case, children with Trisomy 13, or any rare Chromosomal Disorder should be not be judged by the statistics, but as the individual with different, yet specific needs to be addressed.

Initially, we were told so many things about Bryson. That he was a "textbook case", and we have come to find that many of those findings were just not true. Don't let the textbook lure you into believing all that's been written to be true about Trisomy 13. Bryson is writing his own version daily!

2 Comments:

Blogger Patyrish said...

I have to totally agree with you here!

My daughter has partial trisomy 11,22 aka Emanuel Syndrome. When she was diagnosed at six days of age....they gave us the WORST prognosis for her.

They basically made me believe my daughter would be a "lump". I was DEVASTATED.

It didnt take long for me to research and see that while she will have problems....she's NOT going to be the "lump" they described. Believe me she isnt.

At one point we thought she may be a trisomy 13 or 18 baby. I remember being very afraid BECAUSE of the way trisomy 13 & 18 babies are portrayed.

I have since researched and found many families with these babies and they are doing well. Yes they have problems but they thrive and are HAPPY LITTLE ONES. Why the doctors don't feel the need to give SOME KIND OF HOPE for parents to grasp onto I will NEVER understand.

11:51 AM  
Anonymous Anonymous said...

Doretta

I just wanted to send my love to Bryce, Dana and you. You are all in our thoughts and prayers.

Larry

4:52 PM  

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