Posted on 03/03/2005 12:53:29 AM PST by lbmorris11
http://www.rettsyndrome.org/
My daughter Gabriella was diagnosed with Rett syndrome today. The two links explain what it is technically better than I can. The symptoms are regressive. They begin rapidly regressing at age 2 my daughter is 20 months. After regression their is little to no motor skills and communication along with severe retardation. This all seems to be caused by lack of a protein called mecp2. They are beginning to experiment on mice. Knowing the FDA that means many years till treatment comes out. Can anyone answer these questions. Is it true that protein we eat is broken down into amino acids in our digestive systems and then rebuilt into proteins by our bodies? If so would that rule out feeding her mecp2 since she already doesn't make it? If so why not give it to her through an IV? Take an IV used to feed patients and add a small amount of mecp2 into it. Maybe we could use protein made from me(father), mother or her brothers so her body would not reject it. Where are amino acids converted into protein? Couldn't we inject mecp2 there? I know these questions are rambling but I will admit to being slightly hysterical so please forgive.
Please help Lyford Morris
Thanks for the ping, BG. It's always a privilege to pray with you and the great prayer warriors on your list.
Lord, we pray for precious Gabriella that her little body may throw off this distressing condition.
We pray for Lyford and his wife and family. May God surround them with the heavenly light of His grace, His love, and His healing power. May He lead them to the best medical help, to the best circle of supporting praying friends, and to an inner peace that will keep them strong. Amen
Wish I could help with some info. Lyford but I can't.
Our 2yo son has Down syndrome so I can somewhat relate to what you and your family might be going through. In our case it was diagnosed from the beginning as opposed to later on, like your daughter, but I'm sure the initial feelings are much the same.
I can offer you our thoughts and prayers as you and your family go through this.
Best FRegards,
Lone
Prayers for healing your precious Gabriella and for you and your family.
I'm praying for you and your daughter.
prayer bump
I am so sorry your little precious boy was never able to progress on this earth but I can surely tell he was given to the right family. May G-d bless you.
I will pray for strength for her family as you go through this. Whatever feeling you have today, it will get better as the days go on. You will be able to handle whatever hurdles you will have. Praying for her full recovery.
Prayers sent.
Thank you. He did survive for twenty six years far beyond any doctor predictions, although with understandable frailty and was a happy, smiling soul throughout. His health was no match for a bizarre sickness that struck us all, but he never lost his smile.
We take immense comfort in where he is now.
We certainly do and we certainly will. You can count on that.
I'm no expert, but I just skimmed some Rett's websites and it seems to me that the protein in question acts on the brain and nervous system of the developing embryo. It cannot be supplied to the patient after birth as a treatment.
But these websites did state that medical science is making steady advances in genetics. The gene for Rett's was only discovered in 1999. We must believe that a treatment will become available. In the meantime, there are various medications and treatments for the symptoms.
I will keep searching the literature and my daughter, who is in the beginning of a pre-med program will also keep Gabrielle in mind.
You have our wishes that science in time will find an answer.
Thanks, BG....
Prayers for Mr. Morris and his loved ones.
I agree; there always needs to be a second opinion. A hospital in Memphis had our niece and the whole family up in the air for several days with their snap diagnosis of Downs Syndrome of her baby. Further testing was negative; it just happened that she had certain physical traits inherited from both sides of the family that resembled the physical appearance of a Downs child.
Our prayers are being said for this precious child and her family.
Gabrielle....you have a lot of people who now will pray for you, walk beside you and your family and be there any time you need us.
Our love and hugs.....
Logan, Beth & Nana
Prayers lifted!
Your wife and you picked a beautiful name for your baby girl.
Prayer Bump.
Your not hysterical, you are reacting to news that has turned your world upside down.
Keep assessing as you learn more about Rhetts and meet on forums or by other means meet parents you will better be able to sift through the therapies that will help your daughter.
I left a link on your other thread to a parents support and some of these folks have kids in there twenties.
If you can't find it I will go back and freep mail it to you.
We will continue to Pray for your family.
There are alot of Exceptional Parents here at FR who have mildy to severely disabled kids so you are not alone my friend.
The Doctors can put a label/diagnosis on Gabriella but you will find that you and the wife living with her will become the experts on her needs.
Prayer for Perserverence.
It will take time and you will learn to continually assess her developement and care needs.
Keep us updated, please.
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