Biology/genetics questions please help me

http://www.mecp2.org.uk/ ^

[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

[8mmMauser]

We pray for the best for your child. We understand what you are going through and we encourage you to explore every avenue to find answers. I can make no claim to understand the Rhett syndrome and it looks already that many freepers are bringing you some answers and leads. What I can add to this is the understanding of what you are going through, and the despair chasing you and your family.


In our case, we were terrified of the unthinkable, that we could not find any way to make things better and as we went on we met with the very worst of developments, near despair. The unthinkable happened to us, and we pray it will never happen to you. But it was not the end of the world to us, instead was the beginning of a new one for our family. We wished we would have our son develop to at least a modicum above his newborn condition but he didn’t. We would have been thrilled to have had him develop to the degree Terri Schiavo has right now, but he didn’t.

Please consider something we were never told when our son was born. Even when the worst is realized, it is not as unbearable as it seems in the beginning and becomes actually a happiness few understand as we see our care translated into the slightest smile. Finally we saw it as a blessing from Heaven, that we were chosen to help these precious souls.

Our son was damaged from the very beginning, with development no more than two weeks of age ever in his life, and suffered grand mal seizures continually. Doctors and unwitting friends advised us to move on and set this poor child aside but we did not listen.

It took us years to appreciate what a joy our son brought to our life and what a marvelous gift we had received. He spent many years in happiness as well as the suffering and he affected all around him, our friends, neighbors, doctors, and made all our lives just a little bit better by his presence.

We are thrilled that God entrusted to us the care of our son. We pray that as time goes for you, you will be grateful for those improvements no matter how small, and no matter how big. Lord willing your child may experience great improvement.

You will also find as time goes by that well meaning friends and even doctors who do not really understand will give bad advice. Look at their intent with charity and listen to God first before man. We are nearby if you need support.

God bless Gabriella and her family.

[curiousmind]

I am not an MD, don't know much biology and very little genetics, but you might try:

Colostrum Plus which is available at lots of health food stores, but I get mine from "Health Links" the human aspect of KV Vet Supply, can find them on the net. It is the first proteins and amino acids and immune factors babies get from their moms.

I'll add you name to my prayer circle.

[freepertoo]

Praying now for your darling little one, and for you and your wife. Jesus does love the little children.

[Sun]

ADULT stem cell therapy has been helping with many diseases; it would be worth doing a search to see if this therapy might possibly help your daughter.

Also, if mainstream medicine doesn't work, Complimentary Medicine might help. There is a radio show, that can be heard on the internet - HealthyTalkRadio.com. They usually have open lines on Friday mornings, 9 - 11 a.m., Eastern time and Sunday afternoons.

If you call them, they might be able to help. The show has helped my family and me.

There are doctors at acam.org that do both mainstream and complimentary medicine at acam.org

I will pray for your daughter and family.

God bless you.

[dandelion]

Do not be afraid. Your daughter is still with you, and we will help you fight this with pray and research.

You are asking good questions. Let's see what we can do with them...

The first step is to look at the other names for the protein-binding gene:

* MeCP2 protein
* methyl CpG binding protein 2
* MRX16
* MRX79
* PPMX
* RTS
* RTT

This will help us in our search.

I will be posting back later.

[dandelion]

Lyford, you may already know about it, but I wanted to direct you to the Rett Syndrome research page:

http://www.rsrf.org/

It has a lot of information that could be very valuable...

[dandelion]

Calling the prayer warriors in on this one...

[Brad’s Gramma]

Friends....we've got some praying to do....

[SwinneySwitch]

Prayers Up!

[Alamo-Girl]

I am joined in prayer for your daughter and for all of you!

[E.G.C.]

BTTT!!!!!!

[pghkevin]

You ask some very basic questions that your daughter's physician can discuss with you. I will try to give you a little primer to get you started.

The body does digest proteins into amino acids in the stomach. It does not always convert them to individual amino acids but sometime just very tiny fragments. Hence if you were to ingest a large protein, such as the protein you describe it will be digested into amino acids in the stomach due to the acidic content.

Many proteins are injected either into the skin, or into the blood stream via an IV for this very reason. The problem here is that it sounds like your daughters condition is a neurological disorder with a biochemical basis. Therefore, in order for the protein to get to the brain it has to pass through the blood brain barrier. This is not an easy task. The last hurdle that makes it most difficult is if the protein is normally located in cells rather then in the outside of a cell (blood clotting factors circulate around the blood stream outside of cells). It is generally very difficult to get the protein into the cell even if you can get it at the proper location.

I hope this helps gets you the answers you need. My thoughts and prayers are with you.

[Ol' Sox]

It took us years to appreciate what a joy our son brought to our life and what a marvelous gift we had received.

God bless you and your family, 8mm. You are all so rare in this world - those that have found God's calling on your lives and embraced it, even though it was all but unbearable. I am in awe of people like you.

-A Special Olympics coach

[Ol' Sox]

Dear sir,

My family will be praying for you and your family, that healing and understanding might come, that you would not be in despair, and that our good Lord would hold you in the palm of his hand and shelter you. God bless you all.

[STARWISE]

Prayers for the little one. Bless the family with patience, faith and blessed help.

[quack]

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?

I'll have to check back tomorrow,but to answer this question,Yes.Two of my children have PKU(phynelketonuria).Their bodies cannot break down phenylalinine.Luckily,we can control it with a strict,low protein diet.I would suggest contacting Dr.Lane Rutledge at Childrens Hospital in Birmingham Alabama about this issue.

I have to go,but I'll check back tomorrow.God bless!

[Prince Charles]

Payer bump...

[I'm ALL Right!]

I join with you and the others here in prayer for healing and wholeness, and peace.

[cpforlife.org]

PING

[Veto!]

What a beautiful, inspiring and heart-touching message.