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Archive for the 'advocacy' Category

Sep 09 2009

Funny Man Jeff Dunham Not So Funny In New Act

Published by kristy under advocacy, the "r" word Edit This

Comedian ventriloquist, Jeff Dunham has made audiences laugh for decades with his circle of friends, Peanut, Walter, and Jose Jalapeno on a Stick. The majority of his act pokes fun at all races and religions, however Dunham is quick to remind his dummy counterparts that the remarks are politically incorrect and often hurtful to those hearing them. 

On Friday, Sep. 4th, Dunham and “friends” made their appearance to College Station, TX as the headliner of Texas A&M First Yell kick off. As expected, the large stadium was filled almost to capacity with the great anticipation of the laughs the evening would produce. However, the laughs faded when Jeff Dunham and his dummy Walter began a conversation that would demean those with intellectual disabilities.

Walter is depicted as a grumpy, white, old man known for his opinionated sarcasm and often puts down those of other races. During his “conversation” with Dunham, he said that Dunham was a “Retard” and made reference to Dunham riding “The Short Bus”. After Walter used the word “Retard” twice, instead of correcting Walter (as Dunham does all of his puppets when they use hurtful words) he too used the word “Retard” and laughed it off.

However, the majority of the audience was not laughing. 

The past few years, there has been a growing movement to “End the “R” Word” by advocacy leaders and youth who agree that the use of this word is cruel and offensive and considered “Hate Speech” just as any other slur. In March of 2009, the Special Olympics created a national day to “Spread The Word to End The Word” and thousands followed to make this type of language stop.

As a Jeff Dunham fan, my family and I were very excited to attend this evening of laughs. Before we left, I had reminded my 13 yr old son that some of the things said may be inappropriate for his young age. He asked me what I would do if anyone performing used the “R” word during their act. Cringing inwardly, I jokingly told him that I would rush the stage and give them a lecture on the spot! Of course, I didn’t expect the headliner to be the one to use this language. When it happened, both of my children looked at me worried what I might do.  As English author,  Edward Bulwer-Lytton wrote in 1839, “The pen is mightier than the sword”, or in this case….”the keyboard is mightier than rushing the stage”

I wrote Jeff Dunham regarding the act and why using this word is not only offensive, but also opens doors for bullying in the school and the workplace. I educated him on the growing number of advocates backing the Special Olympics to end the “R” word.

I did not ask Mr. Dunham to stop his act. In fact, I didn’t even ask him to quit saying the “R” word. Instead I encouraged him to use this as an important tool to teach his audience the importance of words and how hurtful they can become. I asked him to do what he does when any of his dummies say something that might offend someone.  I asked him tell Walter that using the “R” word is hurtful and hateful and that it is not right to use words that will make fun of those who can’t speak up for themselves.

I hope that Mr. Dunham heeds my suggestions. If you would like to suggest the same you can email him at fanmail@jeffdunham.com

 

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Aug 10 2009

Ties That Bind, Connections In The Down Syndrome Community

When CJ Field, creator of The Traveling Afghan, challenged Down syndrome bloggers to blog about the ties that bind us in the Down syndrome community for a chance to win “An Afghan of your Own”, I couldn’t wait for my chance to write.

As a parent of an adult son with mosaic Down syndrome, I have watched the world evolve over the past 20 years with the incredible invention of the internet. With this device, families are able to connect with one another in a way they were never able to do so before. We now have blogs, Facebook pages, Twitter, and our beloved email groups and listservs that connect us on a daily basis to provide support and information to families throughout the world. With this invention, the Down syndrome community has become one voice.

Think about your next door neighbor for a moment. What do you know about that neighbor? How much do you know about their children? Do you know when they are going on vacation and where they will be going? Do you know how many ear infections their child has had in the past year? Do you know when your neighbor is sad or happy or stressed or angry?

Now think about a family who you know online that lives thousands of miles away and the only thing in common that you share is that you both have a child with Down syndrome or mosaic Down syndrome. How many children does that family have? Do you know when they are going on vacation and where they will be going?  Do you know how many ear infections their child has had in the past year? Do you know when they are sad or happy or stressed or angry?

It is one tiny little chromosome that connects us all. This chromosome is one of the smallest in the body, but it carries the most love. You can connect with your next door neighbor if they have children the same age as yours, but when your child has that extra chromosome, you connect with other families who share that amazing addition in such a different and remarkable way. 

Why do families of children with Down syndrome connect more than others? 

Because we have all been there. No matter where “there” is. We as parents know how it feels for your heart to drop down to your toes and up in your throat simultaneously when you are told your child has Down syndrome or mosaic Down syndrome. We know how scary it is when your child has to have heart surgery or PE tubes in their ears. We know the frustration of waiting for those milestones to come about. We know the never ending alphabet soup of IEP’s. We know the worry of being accepted in the typical community.

But we also know that all these things will be ok! After a while, we realize that the extra chromosome is not a bad thing, and in fact it is a blessing because not only does it tie us to this special and wonderful community, it also allows us to see things that we never knew existed before! We know that the surgeries, although scary, quickly become a story of “remember when…”. We know that the milestones will come eventually, and when they are adults no one will wonder how old they were when they took those first steps or spoke those first words.  We know that we will get through the IEP’s and learn the alphabet in an entirely different way. And, together, we discover how to work with the typical community, so everyone is accepted for who they are and not what they have.

No matter where you go in life, no matter what you are doing, if you have a child with Down syndrome or mosaic Down syndrome, you are part of a very elite group of people. If you are in the grocery line or across the world visiting a foreign land, if you meet a family with a child with Ds or mDs, something comes over the both of you. That knowing smile, that spark that forms in each other’s eyes; with a nod of your head you feel the heart strings that have genetically attached you to this family who otherwise would be complete strangers.

And together you know that you are Never Alone….. 

 

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Jul 23 2009

Down Syndrome Research & Awareness Conference a Success!

Many who have followed me for a while know that I had to step back from my daily blogging during the last months of planning for our Research & Awareness Conference “Building Bridges for Down Syndrome”. All the planning and lack of sleep was worth it in the end!

We have families and professionals come as far as Australia and England and many throughout the US and Canada as well. This was, by far, our largest conference with over 350 in attendance. 

I received numerous emails after the conference saying what a wonderful time the families had and how much information they received from our 30+ speakers in the main conference. I am so glad that those who were able to attend did so! I really enjoyed meeting with everyone and getting to know the families better. 

Out of all the emails I received, there is one that has touched me the most that I really want to share with you. Many months ago, I shared a story with you about Scott and Beth and their expected baby, Elijah. You can read that inspirational story here.  

Well, Scott and Beth and Elijah’s grandparents attended our conference to gain as much information as possible about Down syndrome even before Eli makes an appearance in this world. The following was written by Elijah’s grandma, Debbie and of course…Eli.

 

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

The Miller’s were not the only family in attendance expecting a baby with Down syndrome or mosaic Down syndrome. I think it is wonderful when a family receives this diagnoses, even before their baby makes his or her way in the world, and are already seeking out information to help their baby become the best person that they can be.

When Tim was first diagnosed with mosaic Down syndrome, I asked “Why Me?” and “Why my son?” Now, 20 years later I know the answer to that question. It was so that I could bring information to wonderful families like the Miller’s and all the other families I have the opportunity to talk with, but also and more importantly, if my son was not diagnosed with mosaic Down syndrome, I would not have found all these wonderful families throughout the world who have taught me so much more about life than I could ever teach them!

Thanks to everyone who helped with the conference, presented, volunteered, and attended. We have, without a doubt, began Building Bridges for Down Syndrome!

Conference photos coming soon!

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Jun 11 2009

“Building Bridges for Down Syndrome” 4th Biennial Research & Awareness Conference 2009

 

 

As you all know I have been crazy busy planning for our upcoming conference! I wanted to give y’all some important info so you don’t miss out. 

 

First of all, Next Friday, June 19th is the deadline for reserving your hotel room. We got a great room block at the Sheraton Cincinnati North Hotel & Indoor Water Resort. It is only $105 per night and for $12 per person you can enter the water park. You can book your hotel by going to our website. 

 

The conference registration deadline is Friday, June 26. After this, the fees will increase. You can register at our website.

 

Finally, please see below our press release. If you have a blog or an email list, please post this information for others to see. We are very excited to bring this to everyone and we would hate for anyone who would benefit from this conference to miss out!

 

See you in just a couple of weeks in Cincinnati!!

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Keynote Speaker Congresswoman Cathy McMorris Rogers with husband and newborn son w/DS,  Cole

 

FOR IMMEDIATE RELEASE-June 11, 2009

 

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and ability to connect with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome”: the fourth biennial research and awareness conference presented by the International Mosaic Down Syndrome Association (IMDSA).

 

 

 

The term Down syndrome (DS) was named after Dr. Langdon Down, a British doctor who first described the condition in 1887.  This year marks the 50th Anniversary of the discovery of the extra 21st chromosome that causes Down syndrome.  DS is a genetic condition that occurs in one in every eight-hundred (800) births.  There are four types of Down syndrome:  Trisomy-21, Translocation, Mosaic, and Mosaic-Translocation. 

 

 

 

The Down syndrome community has leapt many hurdles in paving the way for future generations, but there is still a lot of work to do.  The attendees of this biennial research and awareness conference are empowered with information, hope for the future of all individuals with DS, and are given the opportunity to participate in various research studies being conducted onsite during the conference.  Teens and adults with DS, along with their siblings, will learn everything from how to manage a budget to relationships and friendships in the “Teen and Adult Conference.”  Children ages 2-12 with DS along with their siblings, will learn a variety of subjects: Acting and Puppetry to Bullying to Stranger Danger in the “Kid Konference.”  Students interested in professional careers pertaining to DS will supervise these youngsters; giving them a better understanding of what DS really means for these individuals.  Together, families and professionals will enjoy the “Friday Night Family Reunion & Silent Auction” with entertainment from The Amazing Portable Circus and self-advocates Sujeet Desai, Tim Colvin, and Casey Morton.

 

 

 

Some attendees of the 2007 conference held in Richmond, VA said, “At the IMDSA’s Conference, there’s a sense of family the moment you step through the doors, everyone is welcoming.  I’ve learned so many things from all the speakers!” 

 

 

 

Join IMDSA and DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a fully scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, and Casey Morton.  Over 30 experts will discuss various topics that will beneficial to the betterment of all families of children and adults with DS.  This is a life-span conference with topics pertaining to all ages of people with DS.  Researchers and professionals will also benefit greatly by attending.  There will be many great activities, workshops, and sharing of information.  A sure highlight of the weekend will be the “Family Awards and Celebration Banquet and Dance” with self-advocate Jennifer Katz and comedian/musician Dan Kulp. 

 

 

 

Reservations are filling fast and space is limited, so register and reserve your spot today!  For more information on how to register, visit www.imdsa.org

 

 

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The International Mosaic Down Syndrome Association (IMDSA) provides support, information, and research to any family, individual, or professional whose life has been affected by mosaic Down syndrome. Its Research & Awareness Conference provides support, information and research to all forms of Down syndrome.

 

Contact:

Kristy Colvin

IMDSA President

Email: president@imdsa.org

Toll free:  1-888-MDS-LINK

Web:  www.imdsa.org

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May 20 2009

Big News for Mr. Blue Sky!

In 2007, International Mosaic Down Syndrome Association was approached by the writer/producer of the movie Mr. Blue Sky. Mr. Blue Sky is a wonderful movie about three children (2 girls and 1 boy) who grow up together and face the obstacles that most children grow up with. One of the girls in this movie has Down syndrome.

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In the first of the movie, the boy’s mother kills herself. However we don’t really know why until the end of the movie. Because of this, the boy’s father (played by Home Improvement/Family Feud- Richard Karn) becomes an alcoholic.

As they grow up, the boy and the girl (without Ds) (played by Mary Kate Schellhardt) start dating but they really have too many differences to make it together. Then, the boy (played by the late Chaney Kley) winds up falling in love with the girl with Ds (played by Ashley Wolfe) and despite a lot of contriversy they wind up getting married.

IMDSA has been a major supporter of this movie from the beginning of its release. Although many feel as though this is unrealistic, we at IMDSA know that it is very possible for individuals with Down syndrome to marry individuals without Down syndrome because it happens within our community of mosaic Down syndrome quite often. (just ask Casey and Jennifer

You can purchase this DVD and see trailers of the movie by clicking here.

So….. our BIG NEWS  for the day.

I just got a message from Tom Lee-the writer/producer of Mr. Blue Sky

Kareem Dale, the Special Assistant to US President Obama for Disability Policy will be traveling to Serbia on June 10th. The living conditions for people with Down syndrome in Serbia is horrible with the life expectancy of these individuals only reaching 10 years old. It is because of the attitudes of those with disabilities that these individuals are placed in institutions with deplorable conditions and left to die.

It is Mr. Dale’s hope that by showing this movie to the government officials in Serbia, perspectives will change. They will see that individuals with Down syndrome are just like everyone else. They can grow up to be wonderful members of the society and add great value to their communities.

Our movie is truly making the difference that it was created for! To show everyone that people with Down syndrome have the same hopes, the same dreams, the same ambitions and with acceptance, they can reach those dreams and goals! It is just a matter of letting them do what everyone else does and not holding them back from all the can accomplish!

 

This is a huge step in the right direction and I pray that the government of Serbia can change their perspectives, even just a little, and realize that people with Down syndrome are PEOPLE!

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May 19 2009

Happy Birthday Tim! (and my announcement)

Yesterday , I described just a little of what it was like the day before and days-years after I had my son, Tim.  This morning when he awoke, I sang Happy Birthday to him. Tim, being the literal man that he is, told me it wasn’t his birthday till 3:45 pm. (the time he was born) Unfortunately, I was not home at 3:45 because I had to go to the store to buy Tim’s favorite dinner. Chili Enchiladas and Cheese Cake for desert. (yeah… it sounds gross to me too!)

 

So when Garrett and I arrived home we loudly sang Happy Birthday and it was official! My baby boy is 23 years old!

 

Twenty-three years can go by very quickly. It seems like yesterday that I was outside in the front lawn encouraging him to take his first steps, to say his first sentence, or when his older brother Arron, taught him to ride a bike. It doesn’t even seem that long ago when he graduated high school! And as I look back on the last twenty-three years, I see not only changes in Tim, but also changes in me.

 

Sure, I have a few more gray hairs than I care to share. Most definitely, my jeans size is no where near what it was back then. And the energy I had to chase around a hyper-active two-year-old is long gone! But there are other changes in me that are not as physically visible as the others.

 

Back when Tim was first diagnosed with mosaic Down syndrome, I felt very lost and extremely alone. I did not have a clue what mosaic Down syndrome was and I wanted more than anything to have something concrete that I could hold on to. Something that would tell me what this meant, what to expect, what to be worried about, what not to be worried about. I was so frustrated when there was no information out there. Yes, there was plenty of information on Down syndrome. And I tried to use that information to compare notes. But none of it really fell in line with what was happening with Tim.  He was either meeting his milestones way before what the books were saying or way after. He wasn’t having trouble in some areas that the books said he should have trouble in. And when I tried to attend a Ds meeting, I was shunned by the other parents. They made it clear that I did not belong.

 

So, I just raised him the best I could with the zero information I had. I didn’t know what to expect, so when something came up I dealt with it. Which really is not a bad way to live. If you worry about the unknown that may never happen, you will miss out on all the great things that are happening now!

 

However, as a parent, I know how important it is to have something in your hands that you can read and know that everything is going to be alright.

 

Over these past 10 years, I have gained a tremendous amount of knowledge on mosaic Down syndrome. I have spoken with countless doctors, researchers and the real “experts”-parents and individuals with mosaic Down syndrome. I have asked the hard questions and insisted upon answers that I could easily understand.

 

Over these years, it has always been my goal to make sure that no parent ever feels alone, as I did, in raising their child with MDS. We at IMDSA have accomplished that goal! Every family knows they are part of a much larger family. When one family is sad, we are all sad. When one family is happy, we are all happy! But, there is still so much that families need to better understand mosaic Down syndrome. They need the concrete information. They need something to hold on to-to open up and refer to when they have a problem or a question. They need information and they need more than just a blog or a research paper. Families need to know what mosaic Down syndrome is, what it means, what to expect, and what they can do to help their child become the best person possible!

 

They need what I so desperately wished for 21 years ago when I received the diagnosis for Tim.

 

I know this is “Taboo” for writers to do this. But, I am doing it out of my faith in God. Because I know that He has lead me over the years to do this and with His help I can accomplish it! So, although authors are not supposed to announce things such as these I am going out on a limb here and hope I don’t hang myself completely!

 

I am in the process of writing a book about mosaic Down syndrome.  I am half-way finished now and after the conference I will devote the majority of my time to this book. I will still blog every now and then, so please stay with me and if you are subscribed please don’t leave, so when I do write, you wont miss anything.

 

I want to thank my loyal readers here for all your questions this past year. You have helped me grow and helped me learn even more. I am confident that with God’s help, I will be able to bring you the information that you need to help someone with mosaic Down syndrome. This person may be your child, your patient or client, or yourself. I will update you as I can and of course continue writing more about our upcoming conference in Cincinnati! (I hope to have schedules ready for the Teen and Adult Conference and Kid Konference by next week!

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May 02 2009

Changing Adult Transition for Down Syndrome

I have not posted in a while only because I have been swamped with conference planning! If you have not yet reserved your spot for the conference time is running out!

 


MySpace Countdowns

 You can find out how to register for the conference by clicking here

One workshop that we will be having at this conference is a Round Table discussion on Adult Transition and the things that need to be changed with this system in America. When an adult with Down syndrome finishes high school, there should be a transition team in place that will help the adult and their family to make decisions on what to do next. However, that system basically sucks. And, another problem many families are having is the emotional impact of “What do I do now?” Families have trouble letting their child grow up because they have been so focused on their well being for the past 20+ years and all the sudden all the support they once had is basically gone.

 

Tim at High School Graduation

It is time for a change. Just like back in the 70’s when families stood up and demanded that their children be allowed in public schools, families now need to stand up and pioneer this new step to a better future.

If you are interested in being part of this committee, would like to participate in the Round Table discussion in Cincinnati, or just have questions, you can send me an email at Kristy@imdsa.org and I will be happy to talk with you.

 

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Apr 06 2009

Mystery Diagnosis Tonight! Hannah Hannum

Tonight is the night! We have been waiting about a year for this day to arrive and it is finally here! Tonight at 10pm EST on Mystery Diagnosis we will have a small part of telling others about mosaic Down syndrome! This is a huge step for International Mosaic Down Syndrome Association as we will be able to reach so many more families whose children have mosaic Down syndrome and do not know that we are here to provide them with the support, information and research that we work so hard to provide to everyone!

Special Thanks goes to Holly Hannum for telling her daughter, Hannah Hannum’s story of being diagnosed with Myelodysplastic syndrome.(MDS) and later mosaic Down syndrome (mDs). Also, special thanks to Sue Johnson for offering her daughter Isabella to play the part of young Hannah! Not many times on Mystery Diagnosis do you get the opportunity to have 2 individuals with the same diagnosis and both were diagnosed later in life. These families did a great job of telling the story and if there is anything left out we will totally leave that in the hands of editing at the Discovery Health Channel.

If you would like to discuss this story after the show, I will be on Twitter (if I can figure it out enough! lol) You can find me on twitter by just clicking the box to the left of this post that says “follow” on Twitter.  To find out more and read more stories look below.

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On April 6, 2009 the American station, Discovery Health, highlights one of our families’ stories on Mystery Diagnosis. Hannah Hannum is one of thousands of individuals with mosaic Down syndrome who was diagnosed later in life.

 

The average age for individuals to be diagnosed with mosaic Down syndrome is 1-4 years of age. The most common reason for this late diagnosis is the lack of knowledge in the medical field on this rare form of Down syndrome. However, many individuals can go undiagnosed up into adulthood and there are still thousands who never receive a diagnosis.

For more information on mosaic Down syndrome please visit our FAQ’s of MDS

 

 

If you feel that you or a loved one may have mosaic Down syndrome, please contact us and we will be happy to answer your questions.

We invite you to meet some of our families who have received this diagnosis later in life.

Meet Hannah diagnosed at age 3*

 

Meet Isabella diagnosed at age 10 months*

 

Meet Ryan diagnosed at age 3

 

Meet Allison diagnosed at age 5

 

Meet Tim diagnosed at age 2

 

Meet Christina diagnosed at age 25

 

Meet Rachel diagnosed at age 6 months

 

Meet Emily diagnosed at age 18 months

 

Meet Aidan diagnosed at age 2

 

*featured on Mystery Diagnosis

International Mosaic Down Syndrome Association provides support, information and research to all individuals and families touched by mosaic Down syndrome. IMDSA is a nonprofit organization, and is dependent completely upon generous donations to continue its mission of helping families and individuals with MDS. All donations are tax-deductible to the fullest extent of the law.

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Apr 03 2009

Mystery Diagnosis: Isabella Johnson

 

Yesterday I told you about our great news about the Hannum family being on Mystery Diagnosis this Monday April 6th at 10pm EST. The twist to this story is when they taped the show they needed a person to play young Hannah in the reenactment. It didn’t take long to search for someone because Isabella Johnson lived in the same town as Hannah Hannum and she, too has mosaic Down syndrome.

Isabella has her own Mystery Diagnosis story (just not featured on the Discovery Health Channel) When Isabella was 4 months old her mom Sue noticed her pupil did not dilate in one eye and she also kept questioning the smallness of her daughter’s head.  Finally at 9 months of age she was referred to a Geneticist. After convincing the doctor to run test, it was discovered that Isabella had not only mosaic Down syndrome but also Triple X syndrome. (this is a extra copy of the X chromosome) 

Now, at 27 months old, Isabella is beginning to show some speech delays but her motor skills are doing great and she is the joy of her mom and dad’s life!

Isabella is also featured on the back cover of IMDSA’s “What is Mosaic Down Syndrome For The Professional”

 

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For more stories of late diagnosis of mosaic Down syndrome, please visit IMDSA’s website by clicking here. 

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Apr 02 2009

Big News Revealed!

This week, I have been giving clues each day on Twitter and Facebook about some very good news that would impact International Mosaic Down Syndrome Association and families of children and adults with mosaic Down syndrome.

When I began at the first of the week I gave the clue, “Once upon a time there was a little girl…”

Then Tuesday I realized that we had TWO major announcements instead of just one! But, both began with “Once upon a time there was a little girl…” so we were still good.

So, Wednesday I had two clues I had to give….

Clue # 1: this little girl got very sick & no one knew what was wrong with her. After testing, they found out she had…

Clue # 2: this little girl had mosaic Down syndrome but that didn’t stop her from following her dreams. After high school she married &

Then Thursday I gave these clues:

Clue # 1: After testing she had..Leukemia and began chemo. During chemo they found the real reason for the leukemia cells.

Clue # 2:  After high school she married & they moved away and opened a restaurant. Then they had a little girl.

So, now I have some final clues and will let you all know what all this means!

Final Clue # 1:  The reason this little girl had Leukemia was because she had mosaic Down syndrome. But no one knew about it!  And, without knowing about these extra chromosomes, the doctors were giving her what is considered toxic levels of chemotherapy for someone with mosaic Down syndrome or Down syndrome. Under most circumstances a person with mosaic Down syndrome or Down syndrome will die with the chemotherapy given under normal circumstances. For those with this extra 21st chromosome, a different protocol is followed. The good news is, this little girl survived and is in remission! But, that is not the exciting news I am sharing! So… stay with me here and keep reading…

Final Clue #2: Their little girl did not have extra chromosomes. This is not a huge surprise because people with mosaic Down syndrome have a percentage of cells with the extra 21st chromosome and the remaining cells are unaffected. If the cells are not in the reproductive organs, the chance of having a child with Down syndrome is much less.(not impossible, just much less) Last year, this couple attended IMDSA’s 2007 conference in Richmond Virginia and Melissa Bishop (this individual) was our banquet speaker. Last year, the found out that they were expecting another baby!

 

Conclusion and Finally the Reveal!

Big News for Clues #1: Hannah Hannum’s story is a very interesting one and a very important story to share with others. There are numerous cases of undiagnosed individuals and their lives could be in danger simply because they do not know they have mosaic Down syndrome.

This Monday, April 6th, The Discovery Health Channel will air Hannah Hannum’s story on Mystery Diagnosis at 10:00pm EST. We at International Mosaic Down Syndrome Association are very excited about this story airing! We hope that others will hear Hannah’s story and many lives will be saved from medical mistakes that can be avoided. In addition to Hannah Hannum on this show, Isabella Johnson will play the younger Hannah in the reenactment. This was a luck of the draw without a doubt! Hannah and Isabella-both having mosaic Down syndrome which is seemingly rare-live in the same city and were able to do this taping together.

 

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Hannah Hannum

As I write this, we are finalizing IMDSA’s home page for information on these stories as well as many other late or misdiagnosis stories. So, please click here and if it isn’t on at the time check back because it will be up soon!

 

 

 

Big News for Clues # 2: Friday, April 3 Adam and Melissa Bishop are expecting their second child-a son! AJ is scheduled to come by C-section and hopefully tomorrow I will have more updates on The Bishop’s and their new bundle of joy!

 

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Adam & Melissa Bishop

Congratulations Adam &  Melissa! I can’t wait to see pictures of AJ!

 

 

 

 

 

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