Prayer request for 1 year old daughter

RS organization in the UK ^

[lbmorris11]

Today my daughter was diagnosed with Rhetts syndrome. The symptoms are ataxia (a stumbling walk), hand wringing and little use of the hands, and severe mental retardation. She will begin regressing at the age of 2 she is 20 months now. The link explains it if you want to get into the technical part of it. My wife and I are devastated please pray for us.

[ladtx]

Prayers sent to give you strength.

[GodBlessUSA]

Prayers for your daughter and your family for this heartbreaking situation. I pray to Jesus for her to be blessed with a miracle.

[backinthefold]

My heartfelt prayers to you and your family

 

I have a son with Aspergers syndrome, and special babies like this are a gift from God, and I have no doubt about this. My son is a blessing to me every day, and I would not trade him for a million dollars. I was devastated also, thinking that it was my fault he was this way, but I have realized that he is a precious gift. Never forget that our Lord gave you this special little girl for a reason. Rejoice in that knowledge, for God never gives us anything He knows we cant handle.

[samiam1972]

Many prayers for your family during this struggle. I'm so sorry! May God be with you all.

[eyespysomething]

Prayers for all of you.

I can do all things through Christ who strengthens me.

[EternalVigilance]

Been in your shoes. You have my prayers...

[Dutchgirl]

Prayers for the baby and your family. You are not alone...

[agrarianlady]

My little cousin has this. She is such a sweetheart. Her parents are coping. They attend a number of support groups with other parents and it helps. I know that her intellect is not affected, but her ability to connect what she's thinking about with her ability to speak is affected.

I will pray for you and your little darling. I have also been praying for a cure.

[EagleMamaMT]

I'm so sorry about this. God bless and keep you and your family. I'll be praying that the Lord will send you a miracle.

[katieanna]

Blessed Father, uphold this dear little girl and her parents with Your strong Hands and restore the child's health. We ask You for a miracle, in Jesus' Name. Amen.

Be strong, friend. Fear not-believe only.

[Tribune7]

prayer bump

[lbmorris11]

We are leaving for the hospital for our first meeting with the genetic counselors since we know. They told us over the phone. Thank you all for your prayers I can't tell you how encouraging it is.

[knittnmom]

May God grant you the strength and faith you need as you love and care for your daughter. May He guide you to the resources that can be of the most use.

I just came across this article a few minutes ago. Don't know if you're interested..
http://www.newsnet5.com/specialassignment/4234849/detail.html

[FreedomHasACost]

I am praying for your wife and you, that you be comforted and for your daughter. I am so sorry to hear this.

[kiki04]

Prayers for your family.

[luckystarmom]

Thanks for the ping. I'll be praying!

[Alamo-Girl]

I'm very sorry to hear of this report and join with all the others here lifting your daughter, your wife and you up to God for His peace, blessings and guidance!

[oceanperch]

My heartfelt prayers as you have now been pulled into an alternative venue as special needs Parents.

I have been one for 25yrs and after the grief subsides a process will take place again my prayers that you will make the transition with all of God's Blessings.

One piece of advice I always give is continue your parenting as you normally would. Of course now you will become careprovider too. But the two are separate issues.

Here is a link for you and others that also has Angels of Rhetts pictured.

It looks like at a glance that the severity is variable.

Rett Syndrome Information and Resources
Address:http://www.rettsyndrome.org/main/toc-gallery.htm

Don't be discouraged, sure you think, but in time you will find that although life has taken a new road then you had hoped for it will be filled with love.

I will share my motto with you both in times of trial, education, adapting and dealing with an ignorant society keep your chin up and live by
PERSERVERANCE, PERSERVERANCE, PERSERVERANCE.

Keep the cup half full at all times.

God be with all of you as you embark on a special journey.

May your hearts be filled with patience and endurance as God guides you. OP and King Vanity

[luckystarmom]

My daughter has cerebral palsy. We've been very lucky, and she has done well. However, we didn't know this when she was little.

I will pray for you, and I hope that your daughter does better than what the doctor's predict. I also pray for a cure.

I recommend reading about alternative therapies. (It's not a replacement for normal treatment, but sometimes doctor's don't know everything) Fish oil has helped lots of kids with problems. I know it did help my daughter with talking.

Do you remember the movie "Lorenzo's Oil"? You may want to look into that also.

Good luck, and I'll say prayers.

[68-69TonkinGulfYachtClub]

Offering my prayers