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Karina Hoisington - 11/03/00 06:54:16 My Email:Karina@anacon.com | Comments: Im glad to see that Kesa is still with us. She is a cutie. Our prayers are with you always. |
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Karen A. Weils - 10/11/00 04:40:55 My Email:KaDoWe@msn.com | Comments: I want to thank you for your beautiful site.I am thankful that I found it.I never heard of holoprosencehaly before until two months ago.On August 9,2000 God gave us a new grandbaby,a sweet little girl.She was diagnose with holopresencehalpy and the famili s was told that she wasn't going to live a long life.It was a hard thing to accept,I know that God had a purpose for this little girl coming into our lives.On October8,2000 God brought her home to be with him,it was hard to let this little girl go.I thank God for the time we had with this special child.My only prayer is that more people are aware of this birth defect. |
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Elizabeth - 10/09/00 06:38:31 | Comments: Thank you for the very inspirational poem.I have a daughter who was born this summer and diagnosed with Holoprosencephaly. My husbund and I feel truly blessed by her. She is our little miracle.We prayed for her and waited for her for so long. she has taug t us so much. We don't think it's possible to love her anymore than we do.God bless you, your precious one, and your family. |
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Karen Roach - 10/05/00 00:27:31 My Email:roach137494@aol.com | Comments: ANGELS---that's all i can say!!! my cousin joseph ( who is now two) was diagnosed with semi-lobar HPE. They are ALL a BLESSING!!! |
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Dianne Brown - 10/04/00 08:13:12 | Comments: Hi Kesa Anne, My twin brother, Aaron, came with me to see your wonderful pages again. Uncle Aaron brough my two big boys, Colin and Cade Monday afternoon, he thinks. But it is hard keeping track of days, even, right now. That is one reason Aaron is typing and helping write these words. I'm a mommy to big boys, who will be three Christmas eve, but also to one small boy and one small girl. They are eleven days in this world. My big boys are twins, Cade and Colin. My little ones are twins, Caleb and Corinne. But Corinne, just now, is very very very sick. She started having surgeries on her brain two days ago. She has this very bad disease that your nice Grandma and other people are teaching me about, HPE. She is alobar but how close you and she are/were we just really don't know just now. We know you both share/shared enough of this disease and just barely know enough about it that we wish you didn't. And look at me, I've left out Caleb, Corinne's twin. Caleb, Aaron and I think, Cade and Colin think, should have his twin too. But Corinne just isn't doing too good. We are very very very blessed that Day 1 of surgery the doctor we have gave us no chance at all that Corinne would see end of day. She wasn't supposed to make it back out through swinging doors. But that Day passed, Day 2 even passed, a true miracle. And now we are into Day 3 and Corinne has lived a total, like Caleb, of 11 days here with us. We are so very very very grateful. But the surgeries of Day 1, then more Day 2, just happened and happened. And the brain fluid was often difficult to stop from leaking afterwards. The shunt would not work, so the doctor would do it again. And as mentioned, the surgeries had between them leaking of fluids from places made to help and certainly not meant for leaking to happen. All three of my big boys were over 4 pounds when born. Corinne was too and they even said 6, but 6 was cheating a little because there was a bunch of weight thrown in because of fluids. Real simply, Kesa Anne, the problem was that Corinne mostly had fluids and not brains when born. That's this alobar, partly, although it's more mixed up than that. Corey and I knew that a long time ahead of birth, but it was still hard. But there was always a brightside, yet again, because all the doctors said over and over and over Corinne would never be born living. They pretty much said it up to day she was born. So she surprised them by being born living and she surprised the good surgeon who had some especially bad work he had to do. But it is time for us to leave, Kesa Anne. God grants a few minutes to turn our thoughts elsewhere, but right now our thoughts are mostly with our Corinne. We would not lie to you and your nice Grandma who wrote to us. We're sitting not very far from Corinne with a lap top computer mostly distracting ourselves from what is near, too near to us. This Level III NICU place is no fun place to be. It wears and wears on us and we've had little sleep for eleven days now. Even Uncle Aaron who does the typing, and who does much of writing while Corinne's mom watches, is very tired. We have handled most of what has been thrown at us so far, but how much more our mortal bodies can take.....well, we'll just have to leave that in God's hands. The nice moms and grandmoms like yours have helped us a lot too. If our faith in God gets shakey, as happens to us mortal types, it is so nice to look around and find folks like your Grandma and others who made it somehow. And we found her, or we should say that she found us, from a special place where such heros post messages to help each other. When we happen by well they do that many more wonderful things to help us along the way. We know it must be God's hand who has provided your Grandma and others like her and our many friends and family or we would not get to enjoy the picture of you for just a moment. Time to go. Bye bye Kesa Anne. These pages set up for someone born so many years ago are wonderful to visit. They help. Yes they do. But we are mortal and cannot appear to be otherwise very much longer. It was fun to step outside, take a look in at your picture and such, but time to go back to our more normal tears and just being plain, plain tired. Mostly written by Aaron, and all typed by Aaron, but some written by Dianne, who also enjoyed watching what Aaron typed, mostly. Uncle Aaron Dianne Brown, Corinne's Mom aolobar HPE Corinne, another beautiful child like Kesa Anne |
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Tammy Johnson - 09/30/00 23:47:59 My Email:etjohnson@usadatanet.net | Comments: Hi, I found your web site from Hpe team. The web site is wonderfully done.Kesa Anne you are a sweet baby girl.Your family is very lucky you have chosen them.You are a very happy sweet girl.Tell mom she's done a great job.I have a girl Mari who was born on 10/ 9/98 she was diagnosed with MIHF variant(middle inter hemispheric fussion)variant the mildest form of holoprosencephaly. I ENJOYED YOUR SITE,Tammy Johnson |
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Darin Polk - 09/05/00 08:25:58 My Email:darin@erspros.com | Comments: I'm glad I got to meet you, Tracie! I hadn't ever heard of Holoprocencephaly before. Thank you for this informative site, and God bless you and your family. :-) |
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Jennifer Carter - 08/19/00 01:13:24 My URL:http://hometown.aol/jlcebc/index.html My Email:jlcebc@aol.com | Comments: What a pretty little girl. I got your address from Savannah's homesite. My god keep you in his thoughts and congratulations on your little miracle |
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Stacy Tillitson - 07/23/00 20:44:57 My Email:ycats119@aol.com | Comments: Very cute pitures...needs more !!!!! |
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Frank Hervas - 07/21/00 18:57:15 My Email:fhervas@rdgrp.com | Comments: Thank you for all the info-my wife is six months pregnant and through ultra-sounds and an MRI the doctors are saying Alobar Holoprosencephaly and trisomy 13.They say that Faith's condition is very poor and probbably wount make it to term. It has been a ve y confusing time thank you for help how are things now? |
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betty eppley - 06/01/00 13:33:38 My Email:grandmamuffy1@juno.com | Comments: SHE IS GOD'S SPECIAL ANGEL, JUST AS MY GREAT-GRANDSON, NOAH IS. WE CAN'T LOVE THEM ENOUGH. GODBLESS YOU AND YOUR PRECIOUS LITTLE GIRL. |
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Linda - 05/28/00 15:02:52 My URL:http://pages.ivillage.com/pp/notti | Comments: God bless you and your precious little girl. Thank you so much for providing valuable information. Your family is in my prayers. |
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shelley King - 05/28/00 04:53:50 My URL:/heartland/cabin/7766 My Email:shelley@netpluscom.com | Comments: Thank you so much for sharing you page with me. You give me more hope and faith than you will ever know. Please continue to pray for Savannah. due 8/22/00 with semilobar HPE and SHH syndrome. SHelley |
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Chris Hunt - 05/01/00 08:04:06 My Email:phizikill@hotmail.com | Comments: Tracie, tell youre mom she made an excellent site. I've only known you for a little while and know Kesa is the luckiest girl in the world to have the most giving & loving mom in the world. I'll always be here for you guys. muah! |
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mommy - 05/01/00 07:48:28 My Email:coppershap@hotmail.com | Comments: mommy loves you kesa anne your the sweetest angel and the most beautiful angel around. ----- love mommy |
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Mr. and Mrs.Wayne Whitaker - 04/28/00 19:48:39 My Email:wkkjs@juno.com | Comments: May God Bless you and you family. |
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Karen Whitaker - 04/28/00 17:53:37 My Email:wkkjs@juno.com | Comments: KesaAnne is just precious-almost as precious as my grandson, Noah Michael! Noah was also born with HPE, somewhere between semilobar and lobar. After so much pressure to abort him and then such a grim prognosis we consider Noah a true miracle from God an I know God truly has a purpose for him . Thank you so much for your site. It is very informative and encouaging. God Bless You and Your Family Gramma Karen |
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kim shrader - 04/28/00 15:03:45 My Email:kimberly.shrader@asamra.hoffman.army.mil | Comments: Hello Kesa Anne, you are a beautiful little girl. You and my son Noah Michael could be twins. |
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Stanley Wayne Shrader - 04/28/00 14:19:13 My Email:shrader@lwol.com | Comments: This is a great website. |
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Leandra - 04/23/00 18:43:13 My URL:http://www.geocities.com/heartland/ranch/7616 My Email:kreglin@telusplanet.net | Comments: A very special child obviously brought into a very special family. You are definitely loved in a world where so many are not. :) I've never seen so many beautiful pictures of one little girl all on one site before. :) You site makes me want to hug bo h my daughter's and thank God for giving them to me. :) *kisses for KesaAnne* Take special care of you and yours, God Bless. |
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DeDe Wanzek - 04/22/00 03:30:00 My Email:dedewanzek@hotmail.com | Comments: Dear Kesa Anne, I'm so glad you are here. Seeing your picture brought back memories of my own son who had holoprosencephly. He would now be 21 years old. He lived for a short time with us in l978. The years go by so fast. It is wonderful to meet you and I sure would like to talk with your mom on how things are going for all of you. DeDe |
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grand pa - 02/22/00 06:57:44 | Comments: kesa grand pa loves you very much you are my angel from god when I'm having a poor or bad day I look at you and you make me understand that my day is great because you are in it , Kesa. Love your proud grand pa Carl Smyth |
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John - 02/12/00 18:56:54 My Email:JohnNOD@zonnet.nl | Comments: Hi it's me...from ICQ. You're are an ok-girl |
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Stephen Lemass - 02/12/00 09:25:54 My Email:slemass@optusnet.com.au | Comments: It is wonderful to see the pic of your daughter.You both are special people here on gods earth,PLEASE if in any way i can help PLEASE contact me. I'm not the lucky one but, your daughter to have such a caring mother. god bless you both, Stephen Lemass. Australia. |
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Chris LaRue - 02/10/00 19:39:08 My Email:laruemc@hotmail.com | Comments: One beautiful baby!!! You are one very fortunate woman!!! |
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Great Grandma - 02/10/00 02:05:16 | Comments: You are always in hearts. |
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CHRISTINA - 01/10/00 18:50:47 My Email:CMT10993@AOL.COM | Comments: WHAT A CUTIE PIE YOU HAVE THERE. GOD BLESS YOU. |
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Sean Brady - 12/16/99 17:43:38 My Email:seanabrady@hotmail.com | Comments: I like your site. Great information I had heard of microencephaly but not Holoprosencephaly. I have just started using picture it and stumbled across your page while on a quest for templates. Again nice web page. Sean |
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Elizabeth & Clena Medina - 11/09/99 01:28:26 My Email:emedina.rtc@restrust.com | Comments: Hello there. This is a wonderful website. My daughter Celena has microcephaly with semilobar holoprosencephaly. she is was born on 4/22/97. So far so good. Just keep up the faith and let everything fall into place. God Bless and keep in touch. |
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carmine - 11/02/99 19:53:51 My Email:battisc@ix.netcom.com | Comments: A wonderful site -- God bless! |
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Pat Wright - 09/26/99 12:35:48 My Email:pwright1@nycap.rr.com | Comments: I enjoyed visiting your website. I read your messages on team 17, |
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terri - 09/07/99 23:38:26 My Email:stalchin@voyager.net | Comments: hi. just found this site and had to check it out. love, terri |
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Kim H - 08/27/99 07:27:08 My Email:goofyharris@hotmail.com | Comments: she is still as cute as ever. we need new picturs. give her lots and lots of huggs and kisses to her for me and tell her i love her very much. as i do you all. love Aunt Kim |
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Peter Tan - 08/25/99 13:32:22 My Email:pelena@earthlink.net | Comments: |
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Gloria Rodriguez - 08/20/99 01:38:09 My Email:gloriam@ispchannel.com | Comments: God Bless you, Kesa Anne,God's Angel, and your wonderful family! |
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Tonya Shaposka - 08/11/99 12:18:07 My Email:tshaposka@hotmail.com | Comments: I loved the poem for Kesa, it was beatuiful. |
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Kieran - 07/27/99 03:25:02 My Email:ddunning@pirie.myx.net.au | Comments: Hi kesa What a beautiful site . Love the Bears and the pictures. Mum says it was like looking at me 6 yrs ago. Keep smiling, then they won't know what your up to. Kieran 7yrs [last month, another year proving them wrong] |
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melissa DeVere - 07/27/99 01:19:11 My Email:mdevere@aol.com | Comments: I have a five year old son named Brice with semi-lobar hpe |
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- 07/14/99 14:18:53 | Comments: hi kesa, aunt di loves you. |
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Miranda Sparkman - 07/08/99 18:10:18 My Email:brimirjo@tgtel.com | Comments: Hi Kesa. I love your pictures. I hope you are doing ok. love, Miranda 8 years s-lobar hpe, reset osmo stat. |
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Tracyee Scott - 07/07/99 13:56:46 My Email:TracyeeA.Jennings-Scott@GSA.gov | Comments: What a beautiful website and an even more beautiful little girl. It was a pleasure visiting!! Mom to Brandon, semi-lobar HPE, hydrocephalus (v-a shunt), diabetes insipidus |
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Barb Brown - 06/28/99 18:16:19 My Email:browndriver@msn.com | Comments: This is great! The pictures are really good. You did a great job putting this together. I enjoyed seeing Kesa Anne. She is truly a miracle. |
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Holly - 06/28/99 15:41:36 My Email:Hollery_1@hotmail.com | Comments: Hi Kesa how are you doing? love, Holly |
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Louise Stott - 06/28/99 14:07:16 My Email:lmartin@cyberportal.net | Comments: Kesa Anne you are such a sweetheart. This is a wonderful sight. Keep smilin' baby |
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Sandy - 06/28/99 11:59:41 | Comments: What a beautiful and unique site! Kesa Anne is a joy to behold, thank you for sharing her with us! |
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Timothy Pifer - 06/28/99 11:26:49 My Email:toolmantim@kconline.com | Comments: |
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Kim Tuhaka - 06/28/99 09:37:43 My Email:ktuhaka@paradise.net.nz | Comments: A beautiful little girl. Arohanui ki a koe Kesa Anne. Te Tuhaka Whanau (The Tuhaka Family) PS: Sinead sends love too (sl-hpe, microcephaly, diabetes insipidus) |
