Sunday, October 26, 2008

D day and hope!

Two years ago today our world as we knew it and hoped for it came tumbling down.
Two years ago today we went to the hospital to visit the Genetics scientist. We were under the impression we were going to give them a medical history and draw more blood. We knew she didn't have Rett Syndrome because the test had already come back negative. We knew they had sent it off to Houston to what they caled a backup deletion test but we didn't know what that was or what it meant.
We calmly walked in and sat down. The Doctor came in and smiled at us and got out his notebook and started going though the history on both sides. All the normal history questions. Heart, lung,cancer,..........This lasted almost an hour.
He then put down his notebook and said,"Well what we can tell you about Rett Syndrome is unfortunately not much......" He said more things but I stopped breathing and the room started spinning. I stopped him and told him that Abby didn't have Rett Syndrome because we had already taken the test. I just looked at him and said,"Did you just tell me my child has Rett Syndrome and just slipped it into conversation?"
He looked at me and said,"No Mrs. Vejrosta. What I am telling you is that Abigail DOES have Rett Syndrome.
I started to hyperventalate. The room went dark and I just shook and kept saying no, no, no over and over again. I looked over at my husband and his face was red and he was sliding out of his chair and shaking uncontrollably. He had gone into shock. I yelled at them to get somebody, to do something. They got him up on a table and gave him juice and I held him and told him it was ok and we were gonna do this. I told him she was still our baby and she was the same baby we had yesterday and the same baby we had this morning.
By the time we got George on his feet there was several of the genetics doctors and nurses in the room. I remember looking at my daughter who was wobbling around the room and twisting her fingers and smiling. I looked at one of the doctors and said, 'What do we do?"
She looked at me and said, "Take her home and make her comfortable."
I thought she was gonna die. I was so sick. I just shook. I was more worried about my husband though. He was unconsolable.
I went home with the website address they had given me and started to look up information. It did not make me feel any better. It made me feel horrible and empty.
I started looking up online Rett Support Groups an finally found one. They welcomed me immediately and the very next day I heard from the Rett Syndrome Association rep in our area. Later that day we heard from Kathy Hunter the founder of the Rett Syndrome association. We talked to these ladies several times over the next week and they assured me that although it was horrible we could handle it. That Abby was still our baby and we were just going to have to choose to be happy and to learn how to dream new dreams.
There are still days when I don't want to get out of bed. There are still nights when I cry myself to sleep. It usually hits after we have been around a girl her age and we see all that she can do. Or we meet a small child who has something horrible like Down Syndrome and watch him run circles around Abby and is able to communicate.
Abby is very wobbly like a infant just learning to walk. She can't climb up or downstairs. She cannot pick up or hold anything or talk or used her hands. She will never gain these skills unless there is a cure.
In the last two years we have met wonderful families in the same boat as us. They have become our family. I don't know what I would have done in the last two years without The Rettlanders, , Kelly and Carrie and the rest.

Last year I spent the day crying and felling sorry for myself. Today is a new day. Today I will fight . Please read below:

Rett Syndrome Research Trust is looking for 3000 donors for 3000 drugs.
RSRT has committed to testing every FDA-approved drug for efficacy in treating symptoms of Rett Syndrome.
What is a large-scale drug screen, and why must it be undertaken? Clinical trials are the endpoint of a drug discovery process that takes 12 years and costs many hundreds of millions of dollars. A possible shortcut to this process is to identify existing drugs that have the ability to improve Rett symptoms.RSRT has therefore approved the careful and methodical screening of all 2000 FDA-approved drugs plus 1000 compounds. “Hits” (drugs or compounds showing improvements) will be immediately evaluated and fast-tracked directly to clinical trials.
This is crucial work that is ready to go. We call out to every friend and family member of our daughter Abby to speed this project quickly towards completion by sponsoring a drug for $168. All of our girls afflicted with Rett Syndrome deserve a better future. Help us take an essential step forward!
Can't help? Ask your company to make a contribution or pick up RSRT as one of their charities. We as Rett Syndrome families are commited to getting the word out because people can't help if they don't know!
You can Sponsor a Drug in honor of Abby by going to (Scroll to the bottom of the page and you will see her name and it will allow you to donate!!)
We are part of a "family challenge" to see how many drugs we can get sponsored in Abby's name; so we are excited to see what happens! We get notified of each sponsorship so I will let everyone know how we are doing along the way!!!!
Thank you for making a difference in Abby's life and in the lives of thousands of little girls suffering just like her!


Avery said...

terri, keep fighting! It WILL make a difference!

Brooklyn said...

Oh Terri, I am in tears now because of your post - tears because I feel the same things you feel. I cry after being at other girls' birthday parties or a weddings. Ther ARE days that I do not want to go to bed or still think that maybe this is a bad dream. I have angry days too and the pitty party "why me days" I think we ALL as Rett moms have those. I also think these feelings are their stringest on our "anniversary" days.
Like you though - I am a fighter - just like our STRONG little girls and together we ARE going to make a difference, I am so glad I have a wonderful woman like you fighting this battle with me! Keep up the great work and be sure to give that adorable little girl of yours a HUGE hug from me and Brooklyn!XOXOXO