EMILY ELIZABETH WAS BORN ON JULY 22, 2005 IN PAWTUCKET, RI. SHE WAS BORN AT 7 LBS. 15  OZ. 20 INCHES LONG.  SHE WAS A BEAUTIFUL BUT VERY UNHEALTHY LITTLE GIRL. SHE HAD A FEW PROBLEMS TO OVERCOME.
 SHE WAS BORN IN RESPIRATORY DISTRESS AND RUSHED TO BOSTON FOR FURTHER TREATMENT.  THE DOCTORS CAME IN TO TALK TO MY HUSBAND AND I AND TOLD US THE SITUATION..BESIDES HER BEING BORN IN RESPIRATORY DISTRESS, WE ALSO FOUND OUT SHE NEEDED OPEN HEART SURGERY AND WAS TRISOMY 21. WE WERE IN BOSTON FOR 6 DAYS THEN CAME HOME AND JUST LET IT ALL SINK IN THAT OUR DAUGHTER WAS SICK.  2 DAYS LATER, SHE STOPPED BREATHING ON US AND WAS RUSHED BACK TO BOSTON.  THE DOCTORS DID ALL DIFFERENT TESTING ON HER HEART AND SAID SHE NEEDED SURGERY AT 3 MONTHS OF AGE..THIS WAS THE WORST FEELING A MOTHER AND FATHER COULD EVER HEAR. MY HUSBAND AND I CRIED FOR DAYS..THIS IS MORE THAN ANY PARENT SHOULD EVER HAVE TO GO THROUGH.  THE SUMMER WENT WELL WITH NO MAJOR PROBLEMS.  IN SEPTEMBER, EMILY WAS HOSPITALIZED WITH VIRAL MENINGITIS. JUST ANOTHER OBSTACLE SHE HAD TO OVERCOME AND DID.  ON OCTOBER 24, EMILY WENT THROUGH OPEN HEART SURGERY.  SHE WAS IN THE OPERATING ROOM FOR 6 HOURS.  THE LONGEST 6 HOURS OF MY LIFE.. ANYWAY, SHE DID GREAT AND IS DOING WONDERFUL NOW.  SHE IS A BEAUTIFUL HEALTHY BABY GIRL. WE LOVE HER SO MUCH. IN MAY 2006, EMILY WILL GO THROUGH ANOTHER ECHOCARDIOGRAM TO MAKE SURE THE SURGERY REPAIR IS HOLDING UP AND HOPEFULLY SHE WILL NOT NEED TO HAVE SURGERY AGAIN.  EMILY IS NOW 8 MONTHS OLD AND SHE IS 15 LBS. 25 INCHES LONG AND DOING WONDERFUL... CHECK OUT HER PICTURES IN HER PHOTO GALLERY... SHE IS BEAUTIFUL. EMILY IS NOW 10 MONTHS OLD AND SHE IS DOING GREAT. SHE HAD HER ECHOCARDIOGRAM AND ALL IS WELL. THE DOCTORS TOLD US SHE HAS AN EXCELLENT REPAIR TO HER HEART.  EMILY,HOWEVER, IS GOING TO NEED SURGERY ON HER EARS IN THE WEEKS TO COME. SHE WILL BE GOING BACK TO BOSTON TO HAVE TUBES PUT IN HER EARS. WE WILL PROBABLY BE STAYING IN BOSTON FOR ONE NIGHT DUE TO THE ANESTESIA WITH HER HEART CONDITION. EMILY WENT TO HAVE TUBES PUT IN HER EARS ON 6-28-06 AND THIS WAS UNSUCCESSFUL. DUE TO EMILY'S DOWN SYNDROME, THEY WERE UNABLE TO INSERT THE TUBES BECAUSE HER EARDRUMS AND EAR CANAL WAS TOO SMALL. THEY MADE INCISIONS IN HER EAR DRUMS TO DRAIN THE FLUID INSTEAD. SHE IN DOING OKAY NOW. WE WILL FOLLOW UP WITH THE SURGEON AND TRY AGAIN IN 6 MONTHS OR SO.WE WILL UPDATE TO LET YOU KNOW HOW SHE IS DOING. CHECK OUT NEW PICS OF HER IN HER PHOTO GALLERY...EMILY IS NOW 16 MONTHS OLD AND DOING WONDERFUL. SHE IS WALKING NOW AND SAYING WORDS SUCH AS "MAMA" AND "DADA" AND BABBLING ALOT.  SHE IS GOING TO THE EAR DOCTOR AGAIN AT THE END OF DECEMBER TO CHECK IN THE PROGRESS OF EARDRUM GROWTH.  WILL KEEP YOU UPDATED.. MY EMAIL ADDRESS IS EMILYS722051@YAHOO.COM. EMILY IS GOING IN ON JANUARY 11,2007 TO TRY AGAIN TO HAVE TUBES PUT IN HER EARS.  HOPE EVERYTHING GOES WELL. WE WILL KEEP YOU UPDATED... WISH HER LUCK!WELL, EMILY HAD THE TUBES PUT IN HER EARS.. SHE DID VERY WELL.  SHE IS DOING GREAT.

When Emma and I first met, we were at work. I was 18 and Emma was 23. I had
just started at our local superstore where Emma had worked for about 5
years. Emma was the staff canteen assistant and so as I worked the evening,
we quite often had breaks in there together. We started chatting and found
we both liked some similar things. I could tell by looking at Emma that she
was different, but I didn't know why or how. Over a few months (and many
breaks), we really got to know each other. Our first "date" was with friends
to a movie. Emma and my friends all instantly got along as well.

It was now Xmas '95 and a family friend had asked if I could baby sit (8 &
10 year olds!) for them one night. I asked if Emma could come along and they
said that was fine. The kids had gone to sleep and as we watched TV, so Emma
drifted off too. As I sat there, I looked at Emma sleeping and that was when
I knew that we would be together for a long time. I was now aware that she
had Mosaic Downs Syndrome, but that didn't matter, it made Emma even more
special to me.

I was living alone at the time so in January '96 I asked Emma if she would
like to join me. I only lived a stone throw away from work and it would be
so easy for Emma to be with me. Emma did move in and we had a wonderful
whirlwind romance and we were engaged by Valentines Day of '96. Our
engagement took some people by surprise, but we were perfectly happy with
each other. We didn't want to rush anything else so we were engaged for 2
years.
We were married in our local church on 30th may 1998. It was without doubt,
the greatest day or our lives. Emma looked stunning when walked down the
aisle with her father. I had to bite my lip to hold back my emotions and
tears of joy while looking at her.

We have now been married for 8 1/2 wonderful years. It hasn't all been easy.
Emma's mother died of cancer in 2001, which she took very, very hard. Emma
had an extra special emotional bond with her mother, as I believe all people
with Downs would have. She was totally devastated with her loss but then in
early 2002, barely 3 months later, her grand mother died too. Two of the
strongest figures in her life had now gone. There were nights when all she
could do was cry. I felt that I had a big whole to fill for her. Whenever
Emma needed me, I was there for her and I still am. Emma has slowly come to
terms with her loss, but I could never totally fill her void.

In February of this year we found out that Emma was pregnant. We were both
over joyed with the news, but it was unfortunately short lived. Emma had
lower bowel pains and at a scan at 5 weeks, it was shown to us that although
the embryonic sack had formed, there was no foetus growing within. We were
both upset about this and the few weeks after the removal were slow and
empty.
Then in august, everything brightened up again. Emma was pregnant again.
This time she was at 6 weeks. We were both lifted again but were more
cautious as we waited for scan and blood results. We have now had a scan at
10 and 12 weeks and everything looks ok. Emma is now 16 weeks and we have 2
more scans coming up as 20 & 21 weeks. Emma is feeling much better this time
and is just starting to show a little bump! As Emma has Mosaic Downs, we
(and the doctors) are unsure whether our baby will have downs or not.
Doctors have said though that if the baby is made from Emma's jeans that
have Downs, then our baby is likely to have full Downs Syndrome. We hope
that one of the scans later may help to detect possible "clues". We don't
want to know the baby's sex, as this will be an awesome surprise.

Our baby is due early April 2007 and then a whole new chapter in our lives
will begin.

Jordan Power - Toronto, Ontario, Canada
The following is an autobiography written by an 18 year old who has Down syndrome-Trisomy 21 with cluster #4 Autistic Spectrum Disorder. In a society where people are increasingly judged by their looks, clothes, possessions and earning power, it is vital that we assert to the world that the worth of a human life cannot be judged by I.Q., ability to communicate, mobility and so on.
Many writings we see from people who are developmentally-different have been edited. Jordan's mother is a great believer that to edit the work of our children is a misrepresentation that devalues them and gives an unrealistic picture of their disability. She feels that only by seeing and accepting the reality of each as a  unique individual do we recognize and honour their true personality and worth... Mr. Dymny abandoned his children and refused financial support, so the family is no stranger to extreme hardship, yet the single mother says of her youngest son, "He has the same bizarre sense of humour all my kids have. He'd like to be a cop and a performer.  He has an innocence and unconditional love for all that has convinced  me it's the 'normals' who are 'handicapped.'  I feel blessed to have been entrusted with such a special soul. Until I had Jordan I had no idea that the so-called mentally-retarded could impart such wisdom."

IT'S   ME   JORDAN    (Written in 2000)
My name is Jordan Mathew Dylan Dymny-Power. I am 18 years old. I go St. Patrick's Secondley School. My best friends Dan D. Coleman and E. Hubert Asuncion. I live Toronto Ontario Canada. Jordan like to work my job Jesse Manson. I want grow up just like brother Joshua 22 years old play basketball and baseball. Michael is Mickey 39 years old. He's a rock and roll man playing groovy guitar my cool brother. I have 3 sisters the three stooges. Lorelei is live west. Devlin is live England. My favorite is my special sister Cynthia. Cyndy push wilchair I am clown Santa Claus parade just for laghs. I go Danforth Batest Church. I like listen to Billy Joel. Jordan like dancing comedy. My Doris my favorite mother. She is an angel the sound in my heart. I want a tatoue mom on my chest. I enjoy be on stage have people listen to me and be happy be friends all the time. My friend policeman. I will be a cop. I am Officer Jordan M. Power

As my children were born,
I wanted them to be perfect.

When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.

As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.

As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect

I am attaching a picture of my son Mark who is just over 18 months.  He was diagnosed at birth which was a major shock as I was 31 and healthy and there was no thought of DS through a perfectly normal, healthy pregnancy.  He has no major health problems and is doing great.  Of course I couldnÆt wait for him to walk and now that he is I rue the day I wished for it!!!  He is up the stairs before I can blink, has broken so much delph and knocks down ornaments he canÆt reach with his golf stick.  A real little one man destruction team!  He has an amazing personality and really knows his own mind.  We live with my parents (I am a single parent) and they love him to bits.  I have never seen my dad laugh so much as I have in the short time Mark has been on this earth.  It is amazing that somebody so small could bring so much joy and laughter into our world.  He has united our family û immediate and distant û in a way I never would have thought possible and it is amazing to see peopleÆs faces light up when they meet him. 
I have had a hard time dealing with the whole DownÆs ôthingö but I can see light at the end of the tunnel now.  We attend early services on a Monday morning and it is a great service for both Mark and myself.  I get to spend time with other mums and Mark spends time with his little friends.  He also attends a crFche for two days a week with ônormalö children so he really has the best of both worlds. 
I came across your website by accident recently and I would like to congratulate you.  It is a really great idea.  I would be happy for you to give my email address to anybody in my area you think I could be of help to. 

 

19th Sep 04
After years of debating whether to have a third child we finally decided to
towards to end of last year and quite quickly in December we concieved. We
were so excited! Everything was going well, I had the most terrible morning
sickness, much worse than with my boys and I was secretly hoping I was
having a little girl. Our first scan at 14 weeks was fine and also our
second scan at 20 weeks showed absolutely no problems. Unfortunatly Gary
couldn't make it to the second scan, as he travels a lot with his job, also
I was curious to find out the sex of my baby and so we booked to have a
private scan a week later - also you get a video and the boys really wanted
to come along and see the baby. So off we went full of excitement one friday
afternoon in early May. It was obvious the scanning equipment was much
clearer than the local hospitals, I started to get a bit concerned when the
consultant kept going back to look at the baby's heart - he seemed to be
taking ages and didn't say much. Afterwards i asked if everything was ok and
it was then he told us he could see a small hole in the baby's heart (a VSD)
and he couldn't rule out two holes (an AVSD). I immediately said I'm at more
risk of having a baby with Down syndrome aren't I and he said it put the
chances to 1 in 3, my triple test results had been 1 in 250 - which was
higher than it should have been for my age - I'm 33, but it hadn't concerned
us at the time. He also told us we were expecting a girl!!! which was my
dream come true after having two boys. He suggested we had an amnio to find
out if the baby had DS but we refused as there was no way we would have
terminated as the baby was much wanted and already part of our lives.
Obviously we were both very upset and I spent the whole weekend crying, as
nobody wants to be told that something is wrong with their baby.
We were referred to Birmingham womens hospital (BWH) for a scan by the paed.
cardiologist from Birmingham childrens hosp (BCH) at 24 weeks, he confirmed
the diagnosis of an AVSD and again DS was mentioned and again we had to
express our wishes to continue with the pregnancy. He said she would
probably need surgery at 2 - 3 months of age and said he would rescan at 28
weeks.
we went off to BWH at 28 weeks and it was the same diagnosis, but they also
noticed I'd got a fybroid, so referred me back to Warwick hosp (our local
hosp. as we live in Kenilworth) to see the obstetrician to confirm I could
have a vaginal delivery, and we were told to go back to BWH at 36 weeks.
When I went to see the consultant at Warwick the following week she scanned
me to see the fybroid and then noticed my baby had a small amount of ascites
(fluid on her tummy). She rang the fetal medicine team at BWH and they
immediately wanted to see me for another scan, so off we went over there
again the same day, I was devastated as I had no idea what this meant, but
thought it must be bad news as they wanted to see me straight away. I was
very worried about losing my baby. I met Professor Kilby, who was lovely and
reassured us that the baby was ok and that it could just be her heart wasn't
working efficiently, causing the fluid to build up. He said he'd scan me
twice a week and try and get the pregnancy to 34 weeks ( I was 29 weeks at
this point). The following week after the second scan that week the fluid
had built up even more, so it was decided to get me into hosp. to start
digoxin therapy to see if that helped the baby's heart. I was in for a week
and felt terrible on the drugs, but didn't care as long as it was helping my
baby. I was allowed home, but when I was scanned the following week by the
cardiologist we were told the digoxin was making no difference and the fluid
was still building, so it was stopped. They still decided to get me to 34
weeks to give the baby the best chance, but it was a fine balancing act as
if they left her in too long so could have gone into heart failure and died,
also if they got her out too soon she could have had more complications with
prematurity. We were both so scared, I couldn't bear the thought of losing
her. At 33 weeks they decided to book me in for a c/section the following
week, by this stage I was paranoid about her movements and kept praying
she'd make it. I was given steroid injections to help mature her lungs.

On Thursday 29th July 2004 at 9.30am she came into the world - Kyra
Elizabeth Alice - weighing 5lb 12oz. I didn't see her straight away as she
was whisked off to the neonatal unit, she had needed resuscitating, but was
then ok and didn't need ventilating. Her abdomen was very distended with
fluid, they drew off 200ml the next day. I was allowed to see her the same
day - she looked so gorgeous and we were so thankful she made it - we can't
tell you how much. It was 3 days later that DS was confirmed, obviously we
were upset, but we had kind of guessed she might be after all we'd been
told. I still had a couple of days of crying, partly because of the baby
blues, partly because she wasn't on the ward with me and of course partly
because of the DS and her heart condition. But then I told myself everything
has happened for a reason and Kyra wanted to be here as much as I wanted
her, and all I felt for her was such a deep love, the same as I have for my
two boys, and I knew it would all be ok.
She spent two weeks at BWH and then we had her transferred to Warwick to be
nearer home. Her weight dropped to 4lb 6oz and she spent 4 weeks in Warwick
SCBU. I finally made the decision to stop breastfeeding (I had been
expressing all this time) and she was switched to a special infant formula.
She came home last Saturday weighing 5lb 4oz and I am delighted to say she
now weighs 5lb 13oz as of yesterday, so she is doing really well now she is
home with us to love her, and boy do we love her. My two boys absolutely
adore her and Gary is besotted!
 She was scanned again at BCH and she has to have her heart surgery within
the next 2 -3 weeks, which will be very hard, but I know it has to be done.
I am just praying it all goes well and we have her back home soon
afterwards. For now I am just cherishing every moment with her - my little
angel!
Thank you so much for allowing me to share my story - sorry its so long! I
know what you mean about seeing life in a different perspective, you never
know what is around the next corner and I will never take anything for
granted again. I know we may have hard times ahead, but I'm sure we will
have some of the most rewarding times ever too with all of the challenges we
may face. I am determined to treat Kyra the same as my other children, but
in my heart she will always be my very special precious little girl!
Lots of love
Sarah x

Comments = Hello! My husband and I had Joshua in June of 2004. He does have Trisomy 21. We would love to learn everything we can. As is I have looked everywhere and know everything that is in books. I would like to learn from other parents that have been in my shoes with a 4.5 month old infant with Down's. I would also like to teach others that this is not a bad thing. All I have heard from parents is that they were upset and shocked when they were told that their baby had downs. I guess we were lucky, we knew that there was a 3 percent change that Josh would have Down's and somewhere inside me, I just knew that he did. My husband and I would never want to change Josh and we know that we have a long and hard road to follow, but all we want is the very best chance for our son and we will do what it takes to ensure he gets his fair shake. I would love to talk to parent as up beat as we are with it and get others to see it as a blessing, some one thought that my husband and I could handle this and we will together as a family and is blessed to have such a beautiful baby boy with makes my heart smile and every day a wonderful new adventure.

The news of Patrick having Downs hit me like a ton of bricks! I too blamed
myself etc.....
I was 5 months pregnant when a genetic counselor  told us the news. This
person was so cold and negative about our son, and we later learned very
uneducated on Downs. She even went so far as to indicate to us that
"Abortion" was always an option.  NOT FOR US ! We wanted our baby no matter
what. The more my husband and I learned about Downs the more OFF BASE we
knew this person was and what a big misconceptions there is about Downs.

Patrick is a blessing in every way to our home. The girls just adore him.
He always smiling and a very happy baby.
We are very  committed to Patrick utilizing his fullest potentials. " All
Things Are Possible With the Power of God"  Patrick has had NO health
issues to date and so far has hit all mile stones for his age.

The thought has crossed my mind to have another child because I do not want
Patrick to grow up alone (the girls are 15 and 21). However I am 41 and
worried that I am probably pushing fate or maybe even being selfish because
of the additional risk ? ( I think I am told about 1% ?)

Hi! My name is Christine and I have 3 sons. The baby has Down Syndrome. We knew it was a possibility he would have this when he was born. He is now 17 months old. He weighs 21 lbs. He only eats 2nd stage vegetables because he will not eat anything with lumps in it. He will eat 2nd and 3rd stage fruits becausethere are no chunks in it. I am so happy to have found people I can talk toabout John.
I have talked to Parent to Parent [they are a group to match parents up with other people who have gone through the same thing or similar things with their child. I am so thankful to have her to talk to. She lives upthe street from me. 
I remember when the doctor told me that my one blood screening test came back funny, and sent us to Maternity and fetal medicine in York,Pa. That is when we found out he might have Down Syndrome. We also found out he had a reflux in his left kidney. We had a lot to worry about before he was born and after he was born. I did not know if I could handle having a Down Syndrome child but I fell in love with him before he was born, and after he was born I could not take my eyes off him. I love him so much. He makes my life so much fuller and brighter. I can not imagine my life without him. Christine
Ascencio 

Our beautiful granddaughter Ellie was born on 19^th August 2002, she was born to my 20 year old daughter Charlotte and her 26 year old partner Keith.
Charlotte had a healthy pregnancy and normal delivery and parents, grandparents and great grandparents were delighted with our new family member.
The day after Ellies birth she was seen by the paediatrician and was given a clean bill of health and the new parents took their baby home.
Ellie fed and slept well and there were no signs that anything was ôwrongö, until at her routine 12 week check up her GP thought she could hear a heart murmur so she was
referred to a Consultant Paediatrician at the local hospital.  Still no ôalarm bells were ringingö, as a lot of children are found to have heart murmurs that either disappears as the child gets older or cause no trouble.
At the visit to the paediatrician she confirmed a heart murmur and arranged for Ellie to be seen by a cardiologist and have some blood tests.
The cardiologist did an echo test and ECG and then he dropped the bombshell that Ellie had a serious heart condition known as AVSD (Arterial Septal Ventricle Defect) which was 2 holes in her heart, a leaking valve, and she needed major surgery very soon.  Charlotte and I were very shocked and upset at this news especially as Ellie seemed so well. 
The results from the blood tests were not ready and the paediatrician told us she would get in touch with us when they came back.  This was the following day when she telephoned Charlotte and said she was coming to the house to see her, we were now even more worried because we thought this was probably more bad news, which at that very moment it was because our darling Ellie had Downs Syndrome.
This was a condition that none of us knew anything about, or had ever had any contact with any one with the condition, all we knew was that now she was ôextra specialö.
Two weeks later she was in Alder Hey Hospital having her corrective surgery, it was heart breaking to see her on intensive care with a machine helping her to breathe, and wired up to tubes and medical equipment, but she was in very good hands, made a speedy recovery, was soon back to her happy self and discharged home, where she has just gone from strength to strength.
She may reach her milestones a little later than other children her age, but there is nothing she cant do she knows what she wants (and usually gets it!) she has plenty of love, support and encouragement from every body that she comes into contact with.
We could feel sad that she has got this condition, but you couldnt possibly feel sad when you are with her, she is a little ray of sunshine, so happy and so much fun.
To know her is to love her.   

A little about our family:

I am 31 years old as my husband is also, we have been married for almost 12
years (in November).  We have 3 children - Coree 11 1/2, Emory 4 1/2 and
Doyle almost 5 months.  Coree our daughter has down syndrome, we did not
find out until after she was born.  I was 18 years old when I got pregnant
with her and 19 when I delivered.  So along with the shock of being a young
mother (although this is what I wanted) I had to face being the mother of a
special needs child.  I was a child myself. this was difficult, but being so
young, I think that I was so open for change that it might have made it
easier to be open to the difficulties I thought I would incur.  Well here we
are 11 1/2 years later, we have been through a lot, but nothing as difficult
as the upcoming years and dealing with teenagedom.  I shutter to think that
we are in preteenhood.  I am hoping that some of my experience could benefit
others in the group.  You don't often find many support groups out there for
people with older children.

Hello,my name is Liberty Jane & I was born on Tues.the 7th.Sept at 4:47am. I was 6wks.premature,but I was quite a good weight at 6lbs.4oz.,my Mummy says I came "flat-packed" because my little nose,was all squashed in, but its O.K. now, and now that I,m older,I asked my Nannie,to write and tell everyone,what a pretty girl I am. Love Liberty Jane xxx.