My First Blog

What an inspiring story! Your website is beautiful and will, no doubt, serve as an incredible resource for many, many people. You should be very proud. Keep up the good work!

This is such a great site to finally have out there... I'm so thrilled that you are willing to share your story... 

Congratulations, Quinn. What a great resource and a thoroughly entertaining bio. Can't wait for the book. Ros

my daughter is 18, and is in denial that she has vcfs...these are HER words! did you ever go through this? any advice? i am trying to get her interested in this site, but she is SO resistant. do you have a facebook or myspace id? could i have her contact you? or would you be willing to contact her? she might be receptive to talking to you, because you have the same syndrome. any help would be appreciated thanks.

Hello!

I luckily picked up the USA Today that featured you and your book while I was traveling! As an elementary teacher, I have many students each year with similar challenges to yours. It's GREAT that you've established this site!

Would it be possible to add audio to what you've included here? I have MANY students who would need to have an adult read your comments (and those of others) TO them due to their disabilities...I'd prefer that these students have access to your site independently! What would it take "technologically"?

Quinn,

Wow, reading your story is amazing, I originally read your story in the O Magaizine,and then a family member called and let me know that you were on TV.

I have a 20 year old son who has had a journey similar to yours.  He was born in 1989 and underwent 2 open heart surgeries, one at 4 days and one at 4 years.  He was diagnosed when he was 10 with VCFS, after genetic testing.

He has amazing dreams but school has been a struggle, and is currently in his 2nd year at a local community college.  Reading your story is inspiring and I plan on showing it to Kasey to let him know he's not alone with this syndrome. 

Thanks to your and your parents for having the courage to share this journey with the public, it only helps all of us who try so hard to have people understand what/how etc. this syndrome affects all who love and care for anyone who has been blessed with this genetic deletion

Quinn-  I am a mother of 2 children, a social worker and an advocate for those with disabilities.  I commend you on your bravery and insight.  I was delighted to see someone diagnosed with disabilities standing up and telling the world that you are just as an amazing of a person even with disabilities!  In fact I believe that because you have had to overcome much more than the average person you are even more spectacular because you have had to work even harder!!!!  Keep it up!

Stacy Brown

Clear Lake, MN

Dear Quinn,

I read your first blog I to have LD and plan to go to college in the fall. I was just wondering if you heard about the Norman Howard School - it was a school founded in 1980 and named after a Head master of The Gow School, so when i didn't see it up on your site i thought I would tell you about it they have a website and the only difference they have from the Gow School is they are co-ed and a day school.

Hope you can add them the school is amazing as I am sure the others are also.

Jim and I are so proud of all that you have accomplished. We remember all those years in St Mary's and your hard work and determination in everything you do. Just saw you this morning on Moring Cup of Joe. Great job! Terry and Jim Rubenstein

My name is Cynthia and this my first time responding to a blog.  I was watching Morning Joe today because I happened to be at home instead of at my job this morning.  I immediately joined your site because I was so impressed by the things you and your mom had to say during the interview with Joe and Mika.  Once inside the website, I realized that I am not actually of the right demographic to be a member (I am not a young person.  I am a 57 year old high school teacher who works with all kinds of students with disabilities in Ann Arbor, Michigan.)  Let me congratulate you, however, on your new book.  I believe you have much to share with other kids who have Learning Disabilities and I intend to share your work with some of my students. I hope that they will be inspired by the work you've done so far.  If I can ever be of help here on your web site, please feel free to drop an email or blog comment and I will respond.  Best wishes to you in this and future endeavors.

Quinn, I watched the episode of The View today & was very impressed.  I have a son, Daniel, who just turned 9 & also has VCFS.  It was very nice to know that there are people who are famous that also have this diagnosis.  When I saw you on there, I picked up on the physical characteristics before they even mentioned VCFS; so when it was confirmed, I felt so happy that you were on The View.  Maybe some more media coverage will come of this.  Not many know about VCFS, but it is so common that those in the school systems need to be more aware.  Thank you so much for bringing VCFS to light in the media!

Dear Quinn:

Congratulations on your excellent endeavor. You are an inspiration.

You mentioned that you love to surf. I'm an old surfer and I can totally relate to the experiences of being out in the line-up, paddling around and snagging a few good waves. It feels great. That's just how you are making people feel with your efforts: great!

Good luck with everything you do.

"And in the end, the love you take

is equal to the love you make"

                      The Beatles

Thrilled to see this story, my son was diagnosed in 1982 or so,  but no one knew what to do.  I hope this helps many.

Dear Quinn,

I watched you with your parents on the News Hour with Judy Woodruff on 5/6/2009. I am 60 and have Dyslexia and other problems. Oh to hear the heartache you went though in school, puts tears in my eyes.

I would start my life over only on the condition that it start now, giving me a better chance with what is now known. It wasn't until my late 30's that I was tested and found out what was going on. I thought I was the problem, i.e. sabotaging my life or your not trying or what ever reason I could find to punish myself.

I was so touched by your life's story and how your parents were there for you. To all of us with ADD/ADHD and VCFS those who support them I wish you and FriendsOfQuinn all the best.

Thank You

Philip Harrigan Sheedy

The people unable to see the beauty in you are the ones disable.

The people that matter will never care about your differences,

and the people that care about your differences, do not matter at all.

Life is too short to be wasted with bullies, being popular, or being accepted.

Love yourselve and life will love you back, all you need is within you, look not further.

If half the world would be more like you, we would leve in a much better place

Hi Quinn,

I watched you and your parents, a few minutes ago on the PBS channel. I was very impressed with you and your drive to succeed and your level headed thinking. Your website is informative and I learned a great deal from it and the PBS show.

I am impressed with your knowledge of your Geneaology and where you are from. It is important to know from where we come, because knowing of our relatives helps us know about ourselves.

Good luck to you and your endeavors. Happy surfing!

Sherrie

Quinn,

I am so thoroughly impressed by your interview on PBS this evening.  I see from these posts that you've been making the rounds to get the word out about your book and website.  Thanks.  I hope to enjoy both. 

Having been a special education teacher for my last years before retirement, I came to feel that labeling, though made necessary for funding, frequently added to rather than helped resolve children's learning problems.  Your website goes a long way toward opening up a much needed dialogue. 

You strike me as a wonderful person, and it makes me feel very much more human for having spent some time with you and your parents this evening.  Good luck with your endeavors.

Yuma

I too just viewed your interview with Judy Woodruff on the Newshour and what an awesome job you did.  I'm really looking forward to reading your book.  Obviously I'm excited because I came here right away to sign up on your website! 

I have a daughter who is just getting ready for college next year and we invited her to watch the story with us.  She could really relate.  It was also amazing how similar your mother's story is to all mothers of incredible kids with learning differences and other disabilities.  I've always admired your parents' courage and now we are privileged to give witness to yours.  Thank you! 

I will tell the director of my daughter's high school about your blog so that other young adults with LD know there is a place just for them.

Aloha Quinn,

My wife and I would love to extend a invitation to do stand up paddle surfing with us if you are ever in Hawaii.

Our youngest son was diagnosed with ADD and dyslexia when he was 4 and has gone on one of the best schools in the nation ( President Obama's school) Punahou and finished college. I know that I also have ADD and as a man of 55 surfing has saved me.

You and your family are such an inspriation to so many.

So please come and surf with our 'ohana (family) when you are in Hawaii!

Aloha,

Clyde Kaimuloa

 Quinn, i have schizotypy, which gives me problems with learning, memory and attention. I always wondered why I had those three problmes and found out why by Googling schizotypy recently. I didn't know about my schizotypal personality disorder until around fifteen years ago [I am now 61.]

  I hope that diagnosis for people with any problems happens as soon as possible.

  My fingers act like I have dislexia when I type. So, it is good that I have spell check! Do you?

Dear Quinn,

I really loved the story you told about your life and family's history. I read it and found it very interesting.

My name is Tom DuLaney. You may not remember me because we haven't seen or heard from each other in 16 years, but I was at the Lab School of Washington during your early years there.  I went there for only four years. 

I have Asperger Syndrome. Here's how Asperger Syndrome, affects the subject who is afflicted with it. (1.) It sometimes makes it hard  to process information correctly. (2.) It makes it hard to stay organized (3.) It can make certain transitions even more difficult. (4.) One who is afflicted with it, tends to be socially awkward  (5.) It makes it harder to be good with social cues.  (6.) It's also harder for the subject to understand body language and nonverbal cues.  (7.) When the subject is younger ( early childhood to very early adulthood), it especially hard to pay attention or control obsessive thinking. 

Well, despite all those obstacles I have had to overcome all those years, my life has been very successful nonetheless. I currently work 2 jobs. One job is at a local Safeway in North Arlington, where I a courtesy clerk; the other job is at a preschool in a church, in Crystal City, where I am a teacher's aide.

We are living proof, that people such as ourselves, can be successful.

Sincerely yours,

Tom DuLaney

Quinn

My daughter is 11 and was diagnosed with VCFS at approximately age 7.  Like most people, I have never heard of this disorder.  I have done so much research but there are always more questions. 

It is great that you are educating the public on this disorder.  I have found very few common people or doctors that have any knowledge about VCFS.  Because it is the second most  common genetic disorder, people need to be aware.  Most people know about Down Syndrome, but difficult to find anyone who can tell you about VCFS. 

Please continue to educate other and write books so other will understand. 

This disorder has been very devastating for me and my family.  To watch my child suffer through chronic illness and difficulty in school has been very stressful.  Im glad there are others who understand.

Thank you so much

THat Ws Beyond Amazing!!!!!!!!!!!!!!!!!!!!Quinn, you are my hero!!!!!!!!!!!!!!!!!!!!THANKS

Dear Quinn,

I loved your story. I finished the book in 1 day because I couldn't put it down. You are a remarkable person and I am so proud of you. I don't think you would have been the loveable person you had you not gone through the problems you have. I had never heard of VCFS before I saw you and your parents on Charlie Rose's show. I amire you and an so incensed that you have had to experience so much physical and mental pain in your young life especially the parts about being lonely and fearful and not feeling you fit into this world but let me tell you most people have these emotions; those who are healthly and seemingly well adjusted, so don't for a minute feel you are different from most of us in that regard.  As a matter of fact I wish I had the maturity you show in the way you look at life and I am a much older woman. May God continue to bless you Quinn.

Gerri

Hey Quinn.  I was doing some research on LD's.  I work with a Special Education PTA and find that so many of the families with students who are floundering, fail to reach out for help.  My unofficial research tends to suggest that "embarassment" tends to be the main reason many of the parents I come into contact with do not have their kids evaluated, and fail to get them help.  For me, it is incredibly frustrating to watch these kids suffer from poor self esteem and a sense of failure. 

I am just thrilled to have happened upon your incredible site; which I found when I reseached you.  Why did I research you?  Because I just read that you would be doing a book signing in East Hampton (NY) and I live on Long Island.  I am going to make every effort to attend the signing, as in 15 minutes of reading about you and from you, I have become a huge fan!

Hopefully you can get some of that bodysurfing in while you are in EH...beaches and waives out there are awesome!

I will be sending many of my young friends and their parents to your site...keep on making a difference!  Gives the rest of us something to aspire to!

I HAVE BEEN DIAGNOSED WITH ADULT LEARNING DISORDER, ADHD, SOCIAL ANXIETY AND THE LIST GOES ON.  I WANT TO TELL YOU WHAT LIFE IS LIKE HAVING THESE DISORDERS.  FIRST OF ALL MY FRIENDS DON'T WANT TO BE WITH ME BECAUSE I START TO SHAKE AND STUTTER WHENEVER THEY COME OVER.  I JUST GET VERY ANXIOUS IN SOCIAL SITUATIONS.  IF I JUST IGNORE THE FACT THAT I HAVE THESE OTHER PROBLEMS THEY ARE CURIOUS BUT THE FRIENDSHIP STILL EXISTS.  BUT, I HAVE BEEN GOING FOR COUNSELLING AND THEY TOLD ME TO TELL MY FRIENDS.  WELL, MY BOYFRIEND FOUND SOMEONE ELSE AND MY GIRLFRIEND HASN'T CALLED BACK.  SO, THERE GOES MY SOCIAL LIFE.  THIS HAPPENS ALL THE TIME.  I'M NOT ABLE TO KEEP A JOB.  ONCE ALOT OF QUICK LEARNING IS NECESSARY FOR THE JOB, I'M OUT THE DOOR.  THEY INSULT ME, LAUGH AT ME, IGNORE ME.  IT'S ABSOLUTELY TERRIBLE.  OTHERS HAVE SAID I'LL GIVE YOU A LITTLE MORE TIME TO CATCH ON.  IT'S ONLY IF I HAVE A REALLY KIND BOSS CAN I MANAGE TO STAY AT THE JOB FOR ANY LENGTH OF TIME.  MY FAMILY DON'T UNDERSTAND AND THINK THAT BECAUSE I GET FIRED ALL THE TIME OR FAIL COURSES IT'S BECAUSE I JUST DON'T TRY.  THEY THINK I'M A LAZY BUM AND HAVE ABSOLUTELY NO AMBITION.  THIS IS TOTALLY WRONG.  I AM A VERY HARD WORKER, AND WOULD LOVE TO BE ABLE TO ACHIEVE.  MY SELF ESTEEM HAS BEEN EXTREMELY LOW AND SOMETIMES I EVEN SHAKE WHILE SITTING IN A CHAIR ALL ALONE. 

MY DOCTOR WANTS ME TO GO ON DISABILITY BECAUSE I'M NOT CAPABLE OF FUNCTIONING BUT I'VE BEEN REFUSED.  MY LIFE HAS BEEN RUINED BECAUSE OF THESE DISORDERS AND IT'S VERY LONELY.  BEING DISORGANIZED, NEVER BEEN ABLE TO JUST SIT STILL, IMPULSIVE, FORGETFUL GET ME INTO TROUBLE ALL THE TIME.  I'M FEELING DESPERATE. 

DO YOU HAVE ANY SUGGESTIONS?  PLEASE LET ME KNOW.  THANKS.

HI, MY NAME IS JACKELINE, WE HAVE A SON OF 4 THAT HAS THE VCFS AND A GIRL OF 4 MONTHS WHO DOESN´T. WE ARE IN THE MIDDLE OF FOUNDING AN ASSOCIATION IN SPAIN FOR THE VCFS PATIENTS, FAMILY AND FRIENDS, AND IT IS SO INSPIRING TO SEE YOUR STORY, IT´S SO HOPEFULL FOR US TO SEE HOW LIFE IT COULD BE FOR OUR LOVELY BOY. WE WILL LOVE TO BE IN TOUCH WITH YOU, IF YOU DON´T MIND. OUR SON´S WEB SITE IS WWW.AMIGOSDGABRIEL.JIMDO.COM

THANKS FOR SHARING YOUR STORY WITH THE WORLD. YOU ARE A GREAT BOY. I AM IMPRESS BY WHAT YOU ACOMPLISHED ALREADY. GOOD JOB AND KEEP IT UP!!!!

Hi Quinn, my name is Doug and we have a son (Joseph) who has been diagnosed with VCFS. He is almost 3 years old and has had multiple surgeries to correct problems associated with this syndrome (including his heart like you) but is doing very well. Obviously we have a long way to go to see what learning disabilities he will have but we are hopeful that he will be able to deal with whatever comes his way.  Knowing your story and hearing how well you are doing is very inspiring and has given us tremendous hope for him. We have visited with Dr Shprintzen to learn more about VCFS. Everyone at SUNY Upstate Medical Center has been terririfc and we feel lucky to have them guiding us.  I wish you well and look forward to reading your book and staying updated on your website. Thanks!

Hello~

   I am a clinical psychologist tasked with advising the family of a 12 y-o male with VCFS regarding his future education. If you could suggest contacts with information regarding best-educational-practices for this population as well as referral to any adult outcome studies, these would be most appreciated. It would be particularly helpful if you could share some of the techniques and methods that have proved helpful for you. I know that everyone with VCFS has a different learning profile, but it is still helpful to try out anything that has worked for others while helping to put together a toolbox that works for a particular patient.
Thank you for any help you might offer.
Aloha,
Barbara Lee, Psy.D.

Quinn, Congratulations on your book! We have just ordered it and are anxious to read about your journey's. Last night we spent quite a bit of time researching VCFS. The entire process was made so much easier by the information you provide on the web and on YouTube. This site is such a great idea thank you for keeping it going.

Hello Quinn

My name is Jessica and my son's name is John Paul, he is 4 1/2 years old, he was diagnostic with VCFS one year ago.

Thank God he doesn't have heart problems, and he has hypernasality plus some allergies, ear problems and some learning problems. 

I watched your video "Life with VCFS" also the interview at "The Q & A Cafe" and your videos in YouTube 

I really want to Thank U and your mother for let us know more about you.

To be honest. I cry almost everyday thinking about the future of my son, I want to be with him to support him.

Please let us know more about you and your succesful life, I want to think that my John Paul is going to have a normal life, (go to College, have his own family, etc)

God Bless you

Jessica