Seeking Advice from Other Mom's Out There Concerning Rhett Syndrome

I have not experienced this myself, but wanted to offer a poem from my past. I worked 14 years at a residential summer camp for kids with disabilities (Camp C.A.M.P.). At each closing ceremony we read this poem, written by the mother of one of Heaven's very special children...

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth -
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

www.parentswithpurpose.com

You are right to advocate for your daughter. Keep your chin up, this is a difficult challenge but you CAN overcome this.

My DD has PDD and I have started going to the support meetings in North Richland Hills. Check out this web page for the group http://www.featnt.org/home.php

They can also provide you with materials to help you understand what you are facing, hook you up with other that are facing the same thing. Knowledge is your best tool to help your child be the most and happiest she can be.

My prayers are with you. C

Your feelings right now are totally normal. My kids too have a genetic disorder and various other related issues -it's not as impacting as your daughter's, but still impacts them everyday and they suffered for 7 and 10 years before diagnosis. My personal experience is that your daughter can be a better person, more empathetic and more understanding of what's really important in life.

Also, being in the DFW area, you have so many resources that can help your daughter and some of the problems are very, very correctable. There are excellent drugs to help prevent seizures (my family is on one of those) and physical therapy can go a long way. We know one family that has one child with down's syndrome child and 3 of the 7 kids have cystic fibrosis. They have a very strong faith and the parents are two of the most positive people I know. Their son with CF is also a fantastic person and got the most prestigous award in his class given to the best role model for a good Christian life and outstanding citizen. So, with the guidance of good, dedicated parents and medical support and therapy, I believe your daughter can have a great life.

I also recommend you either find a local support group or create one. There is tremendous power in sharing your experiences with others and learning from others on a regular basis.

I can put you in touch with someone I know that holds a fundraiser for children with RHETTS SYN. I will have to ask her permission first before I give out her email address becuase I don't think she is on this website. She does live in the Plano area and knows several local families in your same position. Email me if you would like her contact info.
____@____.com

Please remember that God will only give you what you can handle. The way you look at the situation will have the most impact on how others see your daughter. Find the positive points and blessings everyday and others will do the same. Your family will be in our prayers.

Look into the Defeat Autism Now approach or Dr. Amy Yasko's approach to help your daughter nutritionally and with supplements.

R.,
I just wanted to say how much I am thinking of you and your family. I lost my special needs son 7 years ago to complications from congenital CMV. I wasn't aware of Rett Syndrome until a few years ago when I read the book Follow the Stars Home by Luanne Rice. It is wonderful but tough to read as well, esp. at the end. I know there really is nothing I can say that will make this any better or any easier. Just know that she is and always will be your precious daughter who offers nothing but unconditional love. There will be many challenges and difficult times ahead but so much love, too. I would suggest, if you want to, that you and your family join a support group just to have others who are in the same sitution to talk to. I will be praying for and thinking of you all. If you ever need someone to just talk to send me a private message and I wil send you my cell number. Take care and God bless.
M.

R. -

My son is five and was diagnosed with a seizure disorder at 10 weeks old. He has lots of medical challenges and requires total full time care. It is hard to deal with after diagnosis, but you still love and want the best for your child (and should NOT except anything less). Ours is our 3rd child and we put his needs first in everything we do. I made many new friends after being selected as one of the "special" moms and have met so many truly amazing families. There is a support group in the Denton area for parents of special kids and the leaders have a daughter (I think she is 12 now) with Rhett's. They are wonderful christian people who open their home up once a month to anyone who wants to come. I can get you more info if you are interested or maybe just a phone number if you wanted to talk personally with them.
You can email me at ____@____.com if you'd like. I have a list (mostly in my head or cards in my purse - ha ha) of resources for almost anything you can think of or need. Please let me know if I can help you out in any way.

take care,
S.