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Topic: Don't know what to do

03-24-2006 04:47 AM

Sam   New Member Location: South Australia Registered: Jan 2006 Posts: 21 Last visit: 03-23-2006

Ok I'll try again (my computer when bung on me)A friend has a 1yr old daughter with DS who is very very sick. she has stoped coming to EI because she sees all the rest of the kids as being perfect (I to see my Dakota as being perfect)Her little girl has cataracts in both eyes which they tried to remove but were unsuccessful so shes blind, they've just been told shes deaf in both ears, she is on oxygen because of a serious problem with her lungs, shes about to go in for heart surgery but everyone is very nervous becuase she has had lots of allergic reactions before. her little girl has 'died' a number of times and they have had to revive her as you can imagine most of her life has been spent in hospital. She likes talking to the other mums with kids with DS but is always asking me if I know of anyone else who has a child with DS with similar problems. She's obviously looking for some support (which we are giving in a practical way) but I was wondering if anybody has or knows of a child with similar problems who has had a positive outcome. Or can someone give me some words of wisdom as everytime I see them I just want to cry. Oh, and they also have 4 boys as well as their little girl all under 7 so you can imagine the stress of it all. It makes me thank God for our little miracle time and time again. __________________ Samantha & Darren Zacchaeus 13/Jan/2001 Declan 26/Mar/2002 Jachan 02/Dec/2003 Dakota (ds) 12/Jul/2005

03-24-2006 08:46 AM
Hannah's mom   Senior Member Location: Adironadack Mountains, Upstate NY Registered: Jul 2001 Posts: 927 Last visit: 03-24-2006	There is a group called Parent to Parent that matches people who have kids with similar medical issues and diagnosis.I don't have the info at my fingertips but will look for it today. Maybe if you google it... Maybe this would help a bit.Let me see if I can dig up any info on the group. __________________ Heather- Mom to Hannah(7)DS and Logan (3) www.xanga.com/Momof2monkeys

03-24-2006 09:21 AM
emma'smom   Senior Member Location: Coeur d'Alene, Idaho Registered: Sep 2005 Posts: 243 Last visit: 03-24-2006	My heart breaks for this family. I guess all I can offer right now is prayer for them. Can you give us the mom's first name? You are so right about thanking God for what we have! __________________ Cheryl mom to Justin 2/13/02 Emma 6/23/05 ds

03-24-2006 12:24 PM

marci   Super Member Location: lancaster, Pa Registered: Dec 2004 Posts: 1228 Last visit: 03-24-2006

I know that Ryan Lauren's son on the site has had lots of medical issues. But other then them I haven't dealt with that. We'll keep them in our prayers. __________________ Marci Mom to Caleb, Cody, Evan, Ethan, Alex, Anna, Joni (ds, 4/03) "My mother taught me very early that I could achieve any accomplishment I wanted to. The first was to walk without braces:" Wilma Rudolf winner of three gold medals in running events at the 1960 summer Olympics

03-24-2006 12:31 PM
kfurnival   New Member Location: Baltimore, MD Registered: Mar 2006 Posts: 10 Last visit: 03-23-2006	Try here: http://www.nas.com/downsyn/parent.html

03-24-2006 03:10 PM
Carson's Mom   Senior Member Location: Bossier City, LA Registered: Dec 2005 Posts: 218 Last visit: 03-24-2006	Boy it takes stories like that to make you grateful for what we have. That just breaks your heart. __________________ Kayla, Callan(5), Kenna (3), Carson 5 1/2 months

03-24-2006 03:28 PM

Sally/Grandma to Mya   Super Member Location: Sacramento, California Registered: Dec 2002 Posts: 2479 Last visit: 03-24-2006

Sam, I just wanted to say, that I understand how your friend feels. My grand daughter does not have as many issues as your friends daughter, but none the less. Mya has been diagnosed with Cerebral Palsy (not all doctors will agree on this) as well as Ds. It is hard to see all the other little angels doing so well, when your's is not. That is why it is hard for me sometimes to post on this board. However, without the support of this family here at downsyn.com, and the support of those in our local group, I do not know how we would have made it as far as we have. Even though Ds is not our major issue, the warmth and love we receive from other families is amazing. It does help to talk to others in the same or similar situations, but I always find myself back here...with my "first" family. I hope your friend finds the support that she needs, while also drawing from the love and support that she has found with her Ds friends. Our prayers are sent her way. __________________ Mya's Grandma

03-24-2006 03:54 PM
Madisons Mom   Senior Member Location: Philadelphia, PA Registered: Feb 2005 Posts: 441 Last visit: 03-24-2006	My heart is breaking for that family and the little girl most of all. They are in my prayers. __________________ Madisons Mom Carola Madison Theresia born 2-04-05

03-24-2006 04:46 PM
huskies9798   Super Member Location: cincinnati ohio Registered: Oct 2004 Posts: 1394 Last visit: 03-24-2006	I dont know anyone else with the problems but I just wanted to send some prayers to your friend & daughter __________________ chris mommy to brooke ds 8-30-04 my precious little angel

03-24-2006 04:51 PM
JenBrock'sMom   Super Member Location: Des Moines, Iowa Registered: Sep 2005 Posts: 1314 Last visit: 03-23-2006	Prayers to that sweet baby and her family. May God give them strength to make it through her surgery and find joys in life. __________________ JenBrock'sMom & wife to Jay Brock 7/28/05

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