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Biology/genetics questions please help me
http://www.mecp2.org.uk/ ^

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


TOPICS: Miscellaneous
KEYWORDS: aminoacids; biology; braindevelopment; childhooddiseases; fda; geneticmutations; genetics; medicine; mentalretardation; protein; rhettssyndrome
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To: lbmorris11
Do NOT watch Society's Child." Touted as an ispiring movie of a disabled child and her couragous mother, actually the child is a victim of Rett Syndrome and an idiot mother.
41 posted on 03/03/2005 12:25:04 PM PST by eccentric (a.k.a. baldwidow)
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To: Brad's Gramma; lbmorris11

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


42 posted on 03/03/2005 12:27:52 PM PST by Veto! (Opinions freely dispensed as advice)
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To: lbmorris11

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


43 posted on 03/03/2005 12:57:01 PM PST by LoneGOPinCT (Pats. UConn Hoops. Red Sox. Bush. UConn Football. Patriots Again. Anyone need me to root for a team?)
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To: lbmorris11; Brad's Gramma

Prayers for healing your precious Gabriella and for you and your family.


44 posted on 03/03/2005 1:07:56 PM PST by RottiBiz
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To: lbmorris11

I'm praying for you and your daughter.


45 posted on 03/03/2005 1:14:35 PM PST by Dubya (Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father,but by me)
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To: lbmorris11
Thanks to everyone. Knowing you are praying with us is very encouraging. I appreciate all the links and info. I am researching it and am going to join a retts support group. I have a lot to learn. May God bless you all.
46 posted on 03/03/2005 1:14:43 PM PST by lbmorris11 (America defeating terrorism and Liberalism)
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To: SwinneySwitch

prayer bump


47 posted on 03/03/2005 1:19:45 PM PST by Tribune7
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To: 8mmMauser
That was a beautiful post and some truly inspired advice.

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.

48 posted on 03/03/2005 1:27:09 PM PST by Yaelle
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To: lbmorris11
I am so sorry your Gabrielle got this diagnosis today. I will add my prayers to the collection going upward.

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.

49 posted on 03/03/2005 1:28:54 PM PST by Yaelle
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To: Brad's Gramma

Prayers sent.


50 posted on 03/03/2005 1:38:59 PM PST by Aquamarine
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To: Yaelle

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.



51 posted on 03/03/2005 1:44:20 PM PST by 8mmMauser (www.ChristtheKingMaine.com)
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To: Brad's Gramma

We certainly do and we certainly will. You can count on that.


52 posted on 03/03/2005 1:55:43 PM PST by cubreporter (I trust and admire Rush. He has done more for this country than he will ever know. God bless him.)
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To: lbmorris11

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.


53 posted on 03/03/2005 2:43:22 PM PST by stanz (Those who don't believe in evolution should go jump off the flat edge of the Earth.)
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To: Brad's Gramma; lbmorris11

Thanks, BG....
Prayers for Mr. Morris and his loved ones.


54 posted on 03/03/2005 3:02:08 PM PST by SoKatt
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To: neverdem

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.


55 posted on 03/03/2005 5:06:07 PM PST by Twinkie ( I'm testing to see how many people read taglines. So far, at least two smarties.)
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To: lbmorris11; Brad's Gramma

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


56 posted on 03/03/2005 5:12:14 PM PST by Texas Termite (Anytime is Prayer time!)
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To: lbmorris11
Others on this thread are much more qualified to answer your question. Please know that you, your family, and, your daughter are in my prayers. And – whatever your faith – please believe me when I tell you that I have seen prayers answered; and I am not a kook. Good luck, and, if you are up to it, keep us posted on Gabriella’s progress.
57 posted on 03/03/2005 5:56:03 PM PST by Friend of thunder (No sane person wants war, but oppressors want oppression.)
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To: lbmorris11; Brad's Gramma

Prayers lifted!


58 posted on 03/03/2005 9:44:26 PM PST by Fawnn (Canteen wOOhOO Consultant and CookingWithPam.com person - Faith makes things possible, not easy.)
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To: lbmorris11

Your wife and you picked a beautiful name for your baby girl.


Prayer Bump.


59 posted on 03/03/2005 10:26:17 PM PST by oceanperch (2005 is going to be an Awesome Year, which way that will go only God knows)
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To: lbmorris11

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.



60 posted on 03/03/2005 10:51:25 PM PST by oceanperch (2005 is going to be an Awesome Year, which way that will go only God knows)
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