DownSyn Forum

pmjc48 · Posted: September 01 2006, 6:15 PM Post subject: Hello, I am new here

I decided to join this group as I recognized a lot of names from other groups I belong to so knew I would be among friends. I am the mother of a old son with DS, he also has Eisenmenger syndrome, pulmonary hypertension, chronic lung disease, he has an oesophagostomy and received all his nourishment and medication through a gastrostomy which he has had very successfully for 13 years. Nicky was 19 on August 8th, at birth he was not expected to live past his second birthday but he is a fighter and has proved the medics wrong. HE is one of the less able youngsters with DS, he is non verbal but knows exactly what he wants and came usually make his needs known. he finished at his special school in July and now attends and excellent day center. He has respite at a children's hospice and at respite care home based in the grounds of our local hospital. Nicky is a very easy going young man and has no behaviour problems, he has older brothers and sisters so is the 'baby' of the family and much loved by us all. I am a single Mum and we live in England.

pmjc48 · Posted: September 01 2006, 6:22 PM Post subject:

Forgot to mention that Nick also has an uncorrected AVSD.

sarahuk2 · Posted: September 01 2006, 7:02 PM Post subject:

Hi and welcome to the list from another Brit. You certainly have your hands full but it sounds like you have al ot of support and that best of all Nicky is happy and able to express himself. I hope you enjoy this forum - I have found it very supportive and useful since i joined. I have a little girl called Imogen who is a lively bundle of joy along with her 2 big brothers. Looks forward to hearing more about you and your family

Sarah

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Mum to Charlie,9, Tom 4 and Imogen, 3!(ds)

rhonda · Posted: September 01 2006, 7:16 PM Post subject:

Hello and welcome!! Looking forward to learning more about you and Nicky!!

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Rhonda

Taylor 13, Jordan 12, Dylan 3

dect · Posted: September 01 2006, 8:31 PM Post subject:

Hi there!! We have a little girl with DS and are in the UK as well!!

We look forward to hearing more about Nicky!

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Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

DanielsMommy · Posted: September 01 2006, 9:56 PM Post subject:

Hello and Welcome...I think I recognize you from unomas?? You are certainly among friends Smile

Glad you are here and I am looking forward to hearing more about Nicky.

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Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

,
,

JenBrock'sMom · Posted: September 02 2006, 12:58 PM Post subject:

Hi, thanks for joining Down syn and for sharing Nicky with us. I'm Jen mom to Brock who is 13 months. I look forward to reading more about your family.

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JenBrock'sMom & wife to Jay
Brock 7/28/05

pookeymom · Posted: September 02 2006, 1:04 PM Post subject:

Hello and Welcome

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Stacy
Mom to Tristin (9), Camille (5), Elijah (3), Caleb and Isaac (1)

Koby'sMommy · Posted: September 02 2006, 2:24 PM Post subject:

Super glad to have you join us!
I am glad to hear how well Nicky is doing and how he is a fighter!
I have to ask though, in teh addenum to your first post i see you say he has an uncorrected AVSD, and in your initial post you say he has Eisenmenger(sp) syndrome. COuld you please elaborate on what ES is and also why he has an uncorrecteed AVSD...I am sooo interested in the medical world and love to absorb all I can adn since I have never heard of ES, am very curious also as to why his AVSD is uncorrected...thanks so much for joining and I can't wait to hear more about your wonderful family!-Courtney

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Courtney-Wife to Chris- Mommy to Koby (12/16/04)

"I am careful not to confuse Excellence with Perfection.Excellence I can reach for; Perfection is God's Business" -Michael J.Fox

huskies9798 · Posted: September 02 2006, 3:35 PM Post subject:

hello & welcome to the family cant wait to hear more about nicky!

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chris
mommy to brooke ds 8-30-04 BOY edd 1-24-07
my precious little angel & peanut on the way!

waith · Posted: September 02 2006, 5:26 PM Post subject:

A big welcome to Downsyn. Is Pauline? If it is I'm so pleased you joined us. You and Nicky were such an inspiration when I first had Dominic and lurked on the other site. You will love it here and we will be so grateful for your advice and experience. Where in UK do you live?

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Maxine UK. Mum to Elliott 12, Dominic 2 DS.

LinMac · Posted: September 04 2006, 4:52 PM Post subject:

Welcome ...I'm very pleased to meet you and Nicky!

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Linda & John
mom to Hannah Kate (Age Cool

, Robert (04/16/2004, DS)

owensmom · Posted: September 04 2006, 11:33 PM Post subject:

welcome! as a mom with a young child with ds, it is good to meet others with older children, or should i say, young men, who have ds. i look forward to learning more about your family and Nicky.

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Tricia
mom to Jason 12/24/03 and Owen (ds) 6/29/06

** Hannah's mom ** UK · Posted: September 08 2006, 7:11 PM Post subject:

Hi there

welcome from the board

I am also from England UK

nice to see a fellow brit here too

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Jo mummy to Hannah (DS ) who was 3 in July 05,Rebecca who was 2 in Jan 06 and Rachel born 6th April 2006

My beautiful girls

Please visit Hannah's webpage read all about her journey
Hannah's Video

Grandma to Olivia · Posted: September 09 2006, 11:25 PM Post subject:

Welcome! So glad that you joined us! I am grandmother to Olivia, who is 3 years old. She is my reason for coming here. This is a great place, I think you will like it here!!

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Cindy
Olivia's Grandma

Bitter are the tears of a child: Sweeten them. Deep are the thoughts of a child: Quiet them. Sharp is the grief of a child: Take it from him. Soft is the heart of a child: Do not harden it. - Pamela Glenconner