Posted on 03/03/2005 12:26:29 AM PST by 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.
Prayers for your daughter, you, and your wife.
Bump for Exceptional Parents.
I am praying for you all. I know a bit about what you're going through right now. Over thirty years ago, we had a baby, a son, born with Downs Syndrome along with some other serious birth defects including digestive problems. His name was Michael and he lived to be six weeks old; he died right after a major surgery.
On another note, my husband's niece had a baby a year and a half ago. They diagnosed the baby as having Downs Syndrome while she was still in the hospital after delivery. The baby had so many of the physical characteristics. After extensive tests and several days later, they determined that they had been mistaken.
In both cases, we all just determined to take the babies home and love them. I will admit it was a shock to us all in both cases, but we just took one day at a time. Of course, I always asked God for healing, and I realize now that His will is best. I also realize now that my health was not strong when I became pregnant with Michael. While we can't afford to beat ourselves up, we also need to realize not necessarily everything rough that comes to us is God's fault. He can help us go through our trials and come out stronger on the other side, though. Also, there's the aspect of understanding that what we see on the exterior of any person is not really always what is going on on the inside of that person.
I have found that the healing God provides surrounding lifelong severely disabled babes/kids/adults is the healing that happens to the hearts of those who come in and out of the lives of the disabled.
God's lil Angels in a literal sense.
ping
Thank you for the pings!
lbmorris11, prayers for your precious daughter and for your family.
I will pray for your family. Try to find other families dealing with this as you might be able to help each other. God Bless you all.
I will pray for you and your daughter. I understand your terrible pain and confusion. I have 3 children, and my youngest is now 8. At age 1 and a half he was diagnosed with mental retardation and autism. I know it seems right now nothing will ever be "ok" again. But it will,just have faith and do the best you can for your little girl.
If it be the Lord's will, I pray for His devine intervention to heal your daughter of her affliction. God bless and be with you and your wife, that He will comfort you both.
prayers for your family
Prayers up for all of you. Hold steady.
Prayer Bump for Exceptional Baby Girl.
My prayers for you. We had a special needs child also who passed away at 17 months. He was surely loved and is sorely missed. Such a child is a special trust to you from God.
Please don't let the diagnosis overcome your own parenting instincts and the Lord's inspiration on how to raise your child. Trust the Lord first, yourselves second, and the "experts" third.
Know also that the Lord can heal this child if it be His will, and if it is not His will, if your child has a special mission in life for which she needs this condition, I know the Lord will give you the strength and serenity to assist her in her mission.
Our prayers and thoughts are with you.
I'll be praying for your daughter and for your strength. I know things must be hard, but I pray that no matter what happens, that your daughter will grow up happy and loved by all she meets and that she will bring you joy.
I am so sorry - my heart goes out to you. I know a family whose daughter has Rhetts. May God sustain you and hold your daughter in his hands. May His love guide you through dark times. And dear Lord, let the scientists find a cure for this and make a difference in these girls' lives. Amen
Prayers up for all of you.
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