Home Forum Medical issues Contact Us About Us

 


Chromosome 18 Registry & Research Society
Click here


Shop on IGive and help our cause!!!
iGive.com

We are raising funds to get Katie a service dog to help keep her safe, if your going to do some shopping..why not shop through iGive!?

To find our more about Service dogs and our Fund Raiser for Katie to receive a service dog
Click here


Every Penny Helps!!!


Autism Dog Services
Click Here

Please! help us fund a dog for Katie, donations may be made directly to Autism dog services for Katie P's dog at the link above or you may email me here

Autism dog services on Facebook click: Here


The UTHSCSA Chromosome 18 Clinical Research Center
Click Here


For Our Forum
Click Here



Read about Eli's story and for information on Ring 14
Click Here


 Our Blog, Subscribe in a reader


Equipment and therapies



Introducing the Einstein Challenged Society
"The ONLY limits are based upon ABILITIES"
21 million plus in North America with the genetic anomaly Trisomy 21, and NOT A SINGLE ONE SHOULD BE HELD BACK BECAUSE OF IT

Click Here



National Organization
for rare disorders
Click Here


Education


Pianist for all Occasions
Anthony Franchitto
Located in Toronto Canada 416-272-9449


Medical issues


Accessible Vacation travel planning


Governments and legislation concerning disabilities


For those of you who require assistance in Spanish please check out this Chromosome 18 Spanish forum......Para aquellos de ustedes que requieren la ayuda en espanol por favor comprueba este Cromosoma 18 foro espanol. Click Here...Chasquido Aqui



Genetic Alliance
Click Here


C18Live
A place where individuals with Chromosome 18 anomalies who are 16 and over can email each other to share their stories and offer support and encourage to one another.
Click Here


Chromosome 17.org support and advocacy organization dedicated to Chromosome 17 abnormalities.
Click Here


Contact me


Free online Translation of text to many different combination of languages...
Click Here


Artist LaVonne Petit unique creations!
Paper Eggs


If you are a individual, family member or even a friend of someone who has been newly diagnosed with a Chromosome 18 abnormality please email me and I can try to help you find other families with the same syndrome!

Mail Here.

We are here for all disabilities! If you would like information posted about your syndrome or disorder please email me for info. This page is a resource center for persons with ANY disability.

 

Our mission is to bring awareness and support to all disabilities!!

Check out all the different types of information on our Forum here!!


A Chromosome

Click here for a detailed explanation of what a chromosome is(Flash presentation)

Welcome

My name is Lorrine, along with my children I make our home in Ontario Canada.
I decided to build this web site together with our friend Velvet in Alberta as, an information sharing system for persons and families with disabilities, including but not limited to chromosome abnormalities of Chromosome 18.

Our main focus areas are education, travel, health and networking with others.

Please take the opportunity to share with us any information you think may be of benefit to others.

Our wish is to help anyone who needs information, we will do our best to help you find out what you need through our network of parents and individuals. Some answers don't come easy or ever come at all but we will try our best!

Our Forum is loaded with a lot of useful information, links and sometimes humor and recipes. We look forward to you posting there too. Even if you just need to do some venting, we are here! Just follow the link on the left and then click on register. Velvet has done a ton of legwork and posted a lot of very useful info there! Thanks Velvet!!



**A recent submission, a Mom has submitted some links about Aspergers and different disorders her daughter has, please take the time to check these out, there's a lot of useful info there! For the following syndromes and disorders click here.
Asperger's Syndrome
Scheuermann's Disease
Scoliosis
Trichotillomania ( hair-pulling disorder)
Sensory Deficits - Good starting point

To all the special Mom's out there!

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care
what
sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips,
button
nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby
for being
flat-out ugly.

She wants a baby that will roll over, sit up and take those first
steps
right on schedule (according to the baby development chart on page 57,
column two).

Every mother wants a baby that can see, hear, run, jump and fire
neurons by
the billions.

She wants a kid that can smack the ball out of the park and do toe
points
that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't
pronounce, a
spine that didn't fuse, a missing chromosome or a palate that didn't
close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you
didn't see
the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months,
even
years later, took him in for a routine visit, or scheduled him for a
checkup, and crashed head first into a brick wall as you bore the
brunt of
devastating news.

It didn't seem possible.


That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.


Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it
will be
unseen, quietly treated with trips to the doctor, therapy or surgery.


Mothers of children with disabilities live the limitations with them.


Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper
to a
hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-
intentioned
souls explaining how God is at work when you've occasionally
questioned if
God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting
you,
painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the
motherhood
line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you.

From where I sit, you're way ahead of
the pack.

You've developed the strength of the draft horse while holding onto
the
delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a
disability.

You're a neighbor, a friend, a woman I pass at church and my sister-
in-law.

You're a wonder.


(Lori Borgman is a syndicated columnist and author of All Stressed Up
and No Place To Go)
 


***News Flash***

***Recently I was sent this letter anonymously from a fellow Canadian who is fighting the Ministry of children's services in Alberta. She wants justice for her daughter, family, and all those in foster care who cannot speak for themselves!..Please take a few minutes to read her plea and make you opinion known to the email that follow the letter. Thank you***



No child should ever need know death... let alone to contend with the death of a sibling.

That, however, has been our family's fate when touched by the Ministry of Children's Service's involvement.

Are we parents who came to require assistance under a protection order? No, not whatsoever. Our family has been openly regarded for its love and support of our child. Are we a targeted ethnic group, perhaps? No. We are white middle-class, professional workers (rehabilitation family services and journeyman). So how did Ministry involvement come to pass? It was with the birth of our second child whose prognosis of perceived profound disability that physician called upon social services to lend support to our newly grieving family.

Instead of caseworker offering insight into availability of services and funding for children with special needs, we were directed to surrender our rights in an effort to establish care for our child so that she might develop to her full potential. Why not offer support to natural families? Fifteen years ago, the mentality was archaic and encompassed a vision of children with disabilities placed into foster care where, with government supports, they would be provided for rather than in their own home amongst loving family. Offering the same level of assistance to natural families was unheard of. Parents of children with exceptional needs continue to struggle - even today - to achieve adequate assistance for children with developmental and medical needs.

Is this a difficulty encountered only in Alberta? No. Is it Canada-wide? Yes. Is it a National problem? Yes.

In offering our child a chance at development and life, her health was effectively robbed during her stay in foster care and we feel - with evidence based facts - subsequently resulted in death. Our daughter is dead and no explanations are forthcoming from the Ministry. All promises towards answers remain absent.

Now our surviving children are left without their only sister, us without our beloved little girl. Please, do not allow systematic failure to corrupt without accountability. Our story must unfold in effort to prevent the death of any other child. To establish that children with disabilities are as valued in our society as any other individual regardless of developmental status.

>The Ministry speaks of "isolated events" towards death of children under Ministry care and of governing with transparency. If this is so, let our story become public! Work with us to assure that no children should perish.

Our child's soul was no less perfect in our eyes, nor in God's vision than a child without disability. "S" matters... she mattered in life, she continues to matter in death!!

The hole in our life will always be present.

NDP accuses province of hiding problems in child welfare system

Online footage of mother of child "SM" who is subject of Fatality Inquiry with Edmonton Sun columnist, October 27, 2008:
Andrew Hanon article


Please tell everyone you know...Let them know your outrage at injustice!

Alberta Ministry of Justice: ministryofjustice@gov.ab.ca

In addition contact your local media, MP, or any other representative you can think of!!

Alberta's current Ministry of Children's Services is heavily under
fire for proclaiming that children who have died under Ministry
Direction are considered "isolated events".

This issue is a National dilemma which is not limited to children
under protection orders, but encompass those individuals with
disability receiving services through the Government.

Speak now while the pressure mounts for accountability on behalf of
so many without a voice.

Here is a link to the opposing Party who has called for the Minister
step down:

Attention: Brian Mason and Rachel Notley:

Edmonton.HighlandsNorwood@assembly.ab.ca

Reporter: Andrew Hanon, Edmonton Sun:

andrew.hanon@sunmedia.ca

CBC's Kim Trynacity:

Kim.Trynacity@cbc.ca

Radio Personality, Lesley Primeau:

Lesley.Primeau@corusent.com

Edmonton Journal Reporters, Florence Loyie, Paula Simons and Sarah
O'Donnell:

floyie@thejournal.canwest.com

psimons@thejournal.canwest.com

sodonnell@thejournal.canwest.com

We can make a difference: 'The only thing necessary for evil to
triumph, is for good men to do nothing'.' - Edmund Burke


"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.

Her progress may be very slow,
Accomplishment she may not show
And she'll require extra care
>From the people she meets down there.

She may not run or laugh or play,
Her thoughts might seem quite far away,
In many ways she won't adapt
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please, Lord, find the parents who
Will do this 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".


*submitted by Lorie


**Update** The conference for the 2009 Chromosome 18 Registry and Research Society's Annual Conference will be held at the Red Rock Casino, Resort, & Spa from Sunday, June 28th through Thursday, July 2nd, 2009

"About Chromosome 18 Registry and Research Society:
The Chromosome 18 Registry & Research Society is a lay advocacy organization composed primarily of the parents of individuals with one of the chromosome 18 abnormalities. We are also proud to count among our members affected individuals, extended family members and professionals. Membership is open to any interested person. We are a 501(c)(3) non-profit, tax-exempt public charity.

Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign."
The above quote is taken directly from the Society's web page. It can be found at this address:

http://www.chromosome18.org

I also have a Myspace page located at

http://www.myspace.com/lorrine

Or you may click Here to be taken directly there

September 27, 2008 .....May the wind be at your back...

Lorrine and Gord



WET PANTS

Come with me to a third grade classroom.....

There is a nine-year-old kid sitting at his desk and all of a sudden, there is a puddle between his feet and the front of his pants are wet. He thinks his heart is going to stop because he cannot possibly imagine how this has happened. It's never happened before, and he knows that when the boys find out he will never hear the end of it. When the girls find out, they'll never speak to him again as long as he lives.

The boy believes his heart is going to stop; he puts his head down and prays this prayer, 'Dear God, this is an emergency! I need help now! Five minutes from now I'm dead meat.'

He looks up from his prayer and here comes the teacher with a look in her eyes that says he has been discovered.

As the teacher is walking toward him, a classmate named Susie is carrying a goldfish bowl that is filled with water. Susie trips in front of the teacher and inexplicably dumps the bowl of water in the boy's lap.

Now all of a sudden, instead of being the object of ridicule, the boy is the object of sympathy. The teacher rushes him downstairs and gives him gym shorts to put on while his pants dry out. All the other children are on their hands and knees cleaning up around his desk. The sympathy is wonderful. But as life would have it, the ridicule that should have been his has been transferred to someone else - Susie.

She tries to help, but they tell her to get out. You've done enough, you klutz!'

Finally, at the end of the day, as they are waiting for the bus, the boy walks over to Susie and whispers, 'You did that on purpose, didn't you?' Susie whispers back, 'I wet my pants once too.

'May God help us see the opportunities that are always around us to do good..

Remember.....Just going to church doesn't make you a Christian any more than standing in your garage makes you a car.

Each and everyone one of us is goes through tough times, but God is getting ready to bless you in a way that only He can. Keep the faith.
Lets all help eachother!

* Thanks to Lorie S for sending this to me, everyone needs a little boost of inspiration from time to time!!


Listen to an inspirational young man, Justin Hines is a fellow Canadian and a true talent. Click here.

Justin Hines Documentary Short

"It's not the height of the wall, but the hammer that you swing"
-Justin Hines

"Life does not have to be easy to be wonderful."
- Unknown

"Those who bring sunshine to the lives of others cannot keep it from themselves."
- James M. Barrie

"Happiness is someone to love, something to do, and something to hope for."
- Chinese Proverb

"Wherever there is a human being, there is an opportunity for kindness."
- Seneca

Our web site is International! Listed below are some of the locations of visitors to our site.

Argentina

Australia

Austria

Azerbaijan

Bangladesh

Bahrain

Belgium

Bosnia And Herzegovina

Brazil

Bulgaris

Canada

Chile

China

Colombia

Costa Rica

Croatia

Czech Republic

Denmark

Egypt

El Salvador

Finland

France

Germany

Greece

Hong Kong

Hungary

Iceland

India

Indonesia

Iran

Ireland

Israel

Italy

Japan

Jordan

Kenya

Republic of Korea

Kuwait

Lithuania

Macedonia

Malaysia

Malta

Mexico

Morocco

Netherlands

New Zealand

Nigeria

Norway

Oman

Pakistan

Panama

Peru

Philippines

Poland

Portugal

Romania

Russian Federation

Saudi Arabia

Scotland

Singapore

Slovakia

South Africa

Spain

Sri Lanka

Sweden

Switzerland

Thailand

Ukraine

United Arab Emirates

United Kingdom

United States

Viet Nam

Zimbabwe

Isn't it amazing! All these people from all these countries. Looks like we have a lot more in common than we think!!



IT MATTERS TO THIS ONE

As I walked along the seashore, this young boy greeted me. He was tossing stranded starfish back to the deep blue sea. I said, "Tell me why you bother, why you waste your time this way. There's a million stranded starfish,
does it matter anyway?"
And he said, "It matters to this one. It deserves a chance to grow. It matters to this one, I can't save them all I know. But it matters to this one, I'll return it to the sea. It matters to this one,
and it matters to me."
I walked into the classroom, The teacher greeted me. She was helping
Johnny study, he was struggling I could see. I said, "Tell me why you bother, why waste your time this way. Johnny's only one of millions,
does it matter anyway?"
And she said, "It matters to this one, he deserves a chance to grow. It matters to this one, I can't save them all I know. But it matters to this one,
I'll help him be what he can be. It matters to this one,
and it matters to me."

- Author Unknown


Please keep in mind this is a group of parents and individuals who are sharing, any information you use is at your own judgment and risk. Please use the info wisely and seek medical advise from a licensed physician before beginning any new treatment.
*Disclaimer
The information contained in this website and any linked pages and linked forum are for general information purposes only. The information is provided by Tetrasomy18p.ca and whilst we endeavor to keep the information up-to-date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the website or the information, products, services, treatments or related graphics contained on the website for any purpose. Any reliance you place on such information is therefore strictly at your own risk.

 

This is Tetrasomy 18p, 4 P arms of Chromosome 18 instead of 2
A detailed explanation can be found here on the Registry site.


A chromosome is made up of 2 arms and a center section, the top or smaller of the arms is called the P arm, the bottom or larger of the arms is called the Q arm. the center that 'glues' the 2 arms together is called the centromere.

*This web site is dedicated to

Samantha Martin

our Canadian sister in Tetrasomy 18p who at age 13 got her Angel wings and now watches over us all.



 

Shadowkicks Taekwondo

Special Needs - Parents/Guardians (or designated adult) must accompany any special needs child under the age of 13, as well as those that require additional assistance.

Parent and Tot - Basic Martial Arts classes for children aged 1* to 3 years of age. (* Children must be able to walk unassisted to participate in this class)

Please keep checking back for further updates on start dates and registration times.



Highly recommended!


Nightshade Creations™ personalized stationery



Nightshade Creations™ personalized stationery




The Creative Mommy


Customizing in Creative Cloth Diapers, accessories, and more..Custom orders, and special requests i.e. sizes, styles.
(I have just ordered Katie some overnight cloth diapers from here, Lacey of Creative Mommy is extremely accommodating and happy to do custom sizes!!)
Highly recommended!
Click here



Direct Alert, as a caregiver in Canada , is an emergency response system that connects you in seconds to someone who can help 24-hours-a-day. Simply press your help button in case of emergency. .


Vital card® An emergency information card which in my opinion is a necessity for special needs travel.


 

Variety village is much more than a fitness and life skills facility. It is a place where everyone of all abilities can develop independence, self-confidence and a feeling of belonging. It is also a place that inspires dreams...Scarborough, Ontario. 


 

Tetrasomy 18p.ca products are available HERE! Please check out my online store for items, all profits go to the Chromosome 18 Registry and Research society!!  

 

Medic Alert Canada Important news release for Ontario
Medic Alert Worldwide Links all over the world!


Click here for John's Tetrasomy 18P site!


 

Angels of Hope a nonprofit organization that offers free crocheted angels for anyone in need of hope


RateMDs.com allows patients to rate and read about their doctors and dentists. I've used it many times and find it very very useful! USA, Canada, UK, AU/NZ and IN


Web design by Lorrine©2008

Free Search Engine Submission
Free Search Engine Submission

free html hit counter code
search engine optimization