Tyler's Mission

at Beyond Batten Disease Foundation

Tyler’s fight against Batten Disease.

When Tyler was born in February 2009, it was one of the best days of our family’s lives. He was adored as the “baby” of the family and spoiled by his two loving older sisters. As he grew, he was active and social and seemed to have unlimited energy. It seemed nothing could slow him down.

Then some things started to change. When he was 5, he suffered his first seizure. A year later, his vision suddenly became very poor. Concerned, we sought to find answers to these unusual changes. In the next year and a half, Tyler would see multiple physicians, have a battery of tests, and be the subject of many consultations by teams of medical professionals.

Finally, there was an answer. Tyler was diagnosed with Juvenile Batten Disease (CLN3), an extremely rare and cruel fatal neurodegenerative disease. Children with juvenile Batten Disease progress normally for the first 5 years. They then start to suffer progressive loss of sight, worsening seizures and eventually loss of motor skills and cognitive state. Ultimately, this disease takes their life in the late teens or twenties. Currently, there is no treatment or cure.

We are devastated.

However, while our hearts are broken, we are incredibly blessed that today, Tyler is in great physical and mental shape and extremely coordinated. Tyler is now 8 and loves playing outside, being with friends and family, enjoys the beach, playground, and swimming. While his vision is declining, he has enough to enjoy riding his bicycle, go-cart, and scooter, and loves to sing and dance. He brings tremendous joy and happiness to his surroundings.

But we know that time is not on our side. Our family and Team Tyler’s Mission is to find a cure and defeat Batten Disease. Donations to Tyler’s Mission go directly to critical research needed to find a cure and stop Batten Disease and keep children like Tyler going strong. As we go through this experience, we ask for your continuous prayers for Tyler and help to defeat this disease.

GO TYLER! BEAT BATTEN!

Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Tyler’s Mission is partnering with BBDF to find a cure for juvenile Batten disease for Tyler and hundreds of other children.

The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!

 

Tyler’s Mission has a raised a total of:

$41,499

What People Are Saying:

Contributor Comment
Patricia Murer Troup 2446 Card Making Fundraiser.
Lucia Buethe Supporting Tyler’s Mission!
Kelly Olson From the University of Colorado Club Baseball Team!
Angela Chong God be with you all.
Tina Chen Supporting Tyler’s Mission!
Microsoft Matching Program Directed by Linh Le in support of Tyler’s Mission!
Allison Esquen-Roca Facebook fundraiser in support of Tyler’s Mission!
Raymond McGrath & Patricia Murer Stock donation in support of Tyler’s Mission!
Harry Dunbrack You’re strong Tyler – you can do this!!!
Carlos Jimenez Supporting Tyler’s Mission!
Adam Paterson Supporting Tyler’s Mission!
Jim and Peggy McNeal Supporting Tyler’s Mission!
Rose Yim Supporting Tyler’s Mission
Mark McMahan Best wishes from Mark and Joanne McMahan USNA ’86, Go Tyler!!
Gabriella Hernandez Supporting Tyler’s Mission
Jennifer Kim Supporting Tyler’s Mission
Class of ’86 Anonymous Donor Gift in support of Tyler’s Mission!
Regency Centers Directed from Thomas D. Metzger in support of Tyler’s Mission
Patrick Morocco Keep fighting Tyler! We will keep you in our prayers!/td>
Micghael Cadwell My best wishes to Tyler and all the Kim family.
Zach Reuss Supporting Tyler’s Mission!
Michael Kenny USNA ’86 classmate. Thoughts and prayers are with you!
Jean-Marc Boullianne Supporting Tyler’s Mission!
Jonathan Ting Supporting Tyler’s Mission
Michael Giaon Tyler, you got this! I know you can beat it! I may not know you, but if you’re anything like your sister, I know you’re awesome and full of joy and fun! Keep on fighting big man!
Victoria Milligan I remember meeting Tyler when he was very young. He probably doesn’t remember me but he always made me smile.
I will be praying for a full recovery!
Youbeen Shim For Tyler and his loving family.
David Pimpo Jim, my wife and I keep Tyler in our prayers. We will also pray for you and your family that God will give you the strength to work through this! We are standing with you and TEAM TYLER!
Jeffrey H. Holyfield We’re with you, Tyler! Stay strong.
Nelson Navarro Jim, your son and all of you and your family are in our prayers. God bless you all!
Dan Gruta Hang in there Tyler! Angels are watching over you.
Joe Lautrup We’re praying for the whole family in this fight.
Brian Solo Supporting Tyler’s Mission
James Kilby Go Tyler!
John Griffin Supporting Tyler’s Mission
John Sommer Keep on keeping on, Tyler! All the best from the Sommer family (John ’86, Jensin ’91, Lael ’19 & Peyton ’21)
Christine Donohue Dear Tyler and Team — Keep up the fight! We are praying for all of you!
Denise Stich Supporting Tyler’s Mission
Linh Le God Bless, Go Tyler
Patrick Grandelli Supporting Tyler’s Mission
Lisa Brennan Tyler, you are very inspiring, and we hope you reach your goal! Good luck and stay strong! Let’s “86” Batten disease! Go Navy! All the best to you and your family! Lisa (Voegels) Brennan
Alan Shaffer Supporting Tyler’s Mission
Curtis Brown Go Tyler!
Andrew Kirkpatrick Supporting Tyler’s Mission
Kevin Prusso GO TYLER! BEAT BATTEN!
Jeff Layton Go Navy! Beat Batten! Standing strong with you, Tyler & Jim. #NavyFamily
Steven Donofrio God bless you
Sean Cannon Jim, I wish you all the best in this fight and so glad you reached out to your classmates, Sean.
Don Eyres Best wishes from USNA ’86!
Paul Sita Supporting Tyler’s Mission
Brian O’Malley Supporting Tyler’s Mission
Linda Lee Go Tyler, my love and big boy. Huge squeeze hug from all of us. Linda Eemo
Ronnie Elly Go Tyler! Beat Batten! USNA 1986
Fred Beverly Tyler and family, Our prayers are with you. Go Tyler Beat Batten! Fred & Sherry Beverly
Mike Taylor KEEP FIGHTING TYLER!!
Nicholas Connolly Supporting Tyler’s Mission
Paul Lawrence Continue living life to the fullest!
Thomas Metzger Keep fighting, Tyler. Team Navy is behind you!
Daniel Masur Supporting Tyler’s Mission
Brian Quinlan Keep up the good fight!
Nate Schley Supporting Tyler’s Mission!
Christopher Corish Go, Tyler! Beat JBD! The Corishes Christopher ’86, Mary, CJ, and Sean
Gene Burke Supporting Tyler’s Mission!
William Calvert You all have our prayers. Let us know how it goes. Enjoy every moment you all can.
Edward Brown Supporting Tyler’s Mission!
William Sherer Supporting Tyler’s Mission!
Jeffrey Durand Supporting Tyler’s Mission!
Scott Gureck You can beat this, Tyler! GO TYLER! BEAT BATTEN!
Dan & Erin Beldy Supporting Tyler’s Mission!
Anthony Farina Go Tyler! Beat Batten Disease!
E. Keith Jackson Supporting Tyler’s Mission!
Art Hale Tyler – Keep positive. The Hales ’86
Todd Wagner Go Tyler… Beat Batten!!!!
Mark Bayly Praying for your fight!
Robert Bazan Supporting Tyler’s Mission!
Chris Campion Go Tyler!!
Nancy Brooks Go Tyler! Beat Batten!!
Daniel White Go Tyler!
Phillip McLaughlin Supporting Tyler’s Mission!
Dan Moses Supporting Tyler’s Mission!
Gil Kim Supporting Tyler’s Mission!
Garrick Miller We are all in your corner!
Danielle Kreis Sending love and encouragement to your family. Stay strong, Tyler!
Timothy Keating Tyler: We will lift you up in prayer as you fight this disease. -Tim and Wandalee Keating
Tim Richardson Supporting Tyler’s Mission!
James Tranoris Tyler and family, we are thinking of you, keep fighting!
Sally Han Tyler, Jimmy and family, Never Give Up!
Geetha Chandra Supporting Tyler’s Mission!
Alex Kim Sending our thoughts and prayers for Tyler and your family, Uncle Jimmy! Stay strong, and Go Tyler! -Alex &

Alice Kim (Bruce’s Family)

Razu Miah Tyler, Stay Strong! I know you can beat Batten. “Zahir Anjum”
Kimberly Oshirak Our Sincere best wishes in your important mission – Kimberly & Alan Oshirak
Victor Garcia To Tyler and family, Never Give Up!!
Douglas Kim Supporting Tyler’s Mission!
Rebecca Cerince Go Tyler! From the Maceda Family -Ulysses, Rebecca and Matthew
Garrick Miller Sending you our thoughts and prayers. Enjoy life to the fullest and never give up hope.
Mary Beth Brown Keep fighting, Tyler!
Melissa Russell C’mon Tyler, beat Batten! You have your aunt Susan’s payroll team behind you!
Wendy Timmons Supporting Tyler’s Mission
Chuck Woodruff Have faith and stay strong. GO TYLER! BEAT BATTEN! -The Woodruff Family
Kristen Michael Sending lots and lots of love and support to Tyler and his family! Go Tyler!
Bruce McKenney GO TYLER! BEAT BATTEN! The McKenney’s are on your team.
Golnaz Pourparviz Thoughts and prayers for Tyler… true fighter.
Katharina Gath Dear Kim family, we do not know each other personally but I saw the post on my friend’s facebook (Maria Sawicki). I hope you know that people care: Best wishes for Tyler from Germany.
Shakeel Yusuf Stay strong Tyler you can do it.
Vicky Gavino My prayers are with you Tyler. Stay strong. You can beat this.
Maribeth Luftglass GO TYLER! BEAT BATTEN!
Marty Smith Go Tyler!
John Crane Keep swinging Tyler! Cheering you on young man! Best Wishes – The Crane Family
Jeff Haslow Supporting Tyler’s Mission
Robert Beck Go Tyler, Beat Batten!
Erin Summers Prayers for Tyler and his family. Beat Batten!
Mary Keninitz Tyler & Family – Stay Strong, have hope and keep fighting!
Cathy Camacci Go Tyler and family, stay brave. You are helping others by sharing your story and raising awareness to find a care. Our thoughts are with you, the Camacci family.
Mingu Lee GO TYLER! BEAT BATTEN!
Julie Fowler Supporting Tyler’s Mission
Ann Kelly Sending love, prayers and encouragement. Stay strong, BEAT BATTEN!
Bruce Kim Go Tyler! Jim, Kyung we are all praying for your family.
Jackie Wozniak Supporting Tyler’s Mission
Cliff Whitehead Keep fighting Tyler! Never give up! You can do it!!
Holly White Supporting Tyler’s Mission
Anne Benton Holding your family close to my heart and believing funding research will find a cure.
Sue Meacham Supporting Tyler’s Mission
Ray Miskowski Supporting Tyler’s Mission
Sean Kae Go Tyler! Beat Batten!
Young Kim We are all rooting for you Tyler!
John Kim Stay strong Tyler! We’re praying and cheering for you!! -John, Eunah, Abe & David
Scott Seeberger Tyler, continue to be a fighter and be strong!
William James Supporting Tyler’s Mission
Jon Fink Be strong Tyler. Our love and prayers are with you always.
Meryem Merzaq Supporting Tyler’s Mission
Kevin Reidy Our prayers are with you Tyler. May the love of family & our lord give you strength to fight Batten disease and develop a treatment soon for Tyler and others. Our love to Tyler and the Kim family.
Eleanor Loughran Go Tyler, you have got friends all over the world sending you love, strength and good thoughts. Beat Batten!
Susan Estes Supporting Tyler’s Mission
Brooke Nicholas Supporting Tyler’s Mission
Tony Park Supporting Tyler’s Mission
Nicole Jensen Supporting Tyler’s Mission
Teresa Denton Love and prayers for these young warriors and their families.
Jane Williams Supporting Tyler’s Mission
Kwan Lee Go Navy! Go Tyler! Fight this disease and win!
Timothy Cormier Supporting Tyler’s Mission
Allison Cormier GO Tyler!! I will be there every day at school encouraging joyful giggles out of that sweet face!
Ivan Pierce Supporting Tyler’s Mission
Laynie Gilida Supporting Tyler’s Mission
Matthew Henry Supporting Tyler’s Mission
Donald Sohn Stay strong Tyler! Many people who you may not know are pulling for you and praying for your full recovery. Each day is one day closer to a cure.
Sonya Courtney Prayers for Tyler – Beat Batten!
Michelle Schneider Sending lots of love and prayers your way!
Young Lim Tyler is in our prayers. All things are possible with God!
Soo Chung We are with you in Tyler’s Mission to beat Batten disease.
SK SK My Love and prayers are with you and your family. May God help us Beat Batten.
Michelle Hur Tyler, keep fighting. We are cheering for you. Our prayers are with you.
Eugene Potente Tyler, stay strong and hang in there! Your father and I went to college together and you can’t find a more loving individual as you well know. Our prayers are with you!
Doug Casserly Supporting Tyler’s Mission
Marvin Park Go Tyler! Beat Batten!
David Levy Dear Kim Family, The word for “life” in Hebrew is “chai.” It has the numerical value in Hebrew of 18. So, many jews give in multiples of 18. In this case, 18*10 or 10 times life.

Find success Tyler.

Karen Winkelman Supporting Tyler’s Mission
David Mee Keep fighting on Tyler!
Jeff Fischer Tyler be strong, prayers are with you.
Suzi Fox We send all of our love and encouragement to Tyler and Family! BEAT BATTEN!
Kyong Kim Praying every day for a cure to stop Batten. May God watch over us as we navigate through this journey. Have faith and stay strong. Go Tyler! Defeat Batten! We love you!
Lori Radcliffe Supporting Tyler’s Mission
Megan Leach Supporting Tyler’s Mission
Scott Braun Supporting Tyler’s Mission
Tanner Reidy You got this Tyler! Keep that head up and charge the mountain. We all love you and can’t wait to see y’all soon. Beat Batten!
Robert Kinder We are grateful to make this donation in honor of Tyler and in support of your family’s fight against this terrible disease. You will be in our hearts and prayers. Love, The Kinder Family
Cindy Zalesak Go Tyler!!!!! The Zalesaks from Highlands Ranch are on your team!
Keaton Reidy Hey Tyler, this is Keaton. We miss you out here and are really pushing for you. We love you so much. Stay positive like you always have!
Ann Reidy We love you guys. We will continue to fight this disease! Let’s find a cure. GO TYLER.

BEAT BATTEN!!

Anne Mitchell You got this Tyler!!
Shawn Finnerty Supporting Tyler’s Mission
Susan Quinn To Tyler’s Mission… Beat Batten!
Michelle McGuire My thoughts and prayers are with all of your family. I’m so sorry to hear this.
Linda Niemann Prayers!
Patty Poticha Tyler and Family, The power of love and prayer are amazing as is a very positive attitude. My prayers will be with you!
Chong Yi Go Tyler! Beat Batten!
The Yu Family Jim, Kyung, Thank you for allowing the Yu family to be faithful companion who will walk the long road to Tyler’s recovery with you. May our lord bless all members of the Kim family with peace.
Jessica Hwang Supporting Tyler’s Mission
Hong Kim Supporting Tyler’s Mission
Mary Beth Kiser Welcome to Beyond Batten Disease Foundation. We thank you for your partnership in bringing a treatment to Tyler and all kids affected by Batten disease.
Brittany Thomas We are excited to work with you to eradicate Batten disease.
Kasandra Keyes Go Tyler! Defeat Batten!

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