+399 votes
Ellen Ticket Noification Someone You Should Know: Jaxton Engstrom
Description
WATERLOO (KWWL) -
7 year old Jaxton Engstrom's favorite character is the Grinch, but he's far from him.

He started doing acts of kindness around his community and school in exchange for paper hearts. Every time he shows an act of kindness, he places a heart on his wall to watch the Grinch's heart grow. Whether it's giving a hug or donating, he has created a ripple effect.

His teacher said, Ashley Duncan said, " Within the school, there has been hundreds of kids who have done acts of kindness and they put their hearts on the wall and it has just continued to grow."

Jaxton cannot see the hearts though. He is blind. About a year ago, he was diagnosed with Batten Disease, which is a rare, inherited disease of the nervous system. It is fatal.

His mother, Tina Engstrom said," We want to do what we can while we can because we know this disease is progressive...but he is laughing. Everybody should be able to laugh and do things and appreciate things."

He may not be able to see the reactions from his givings, but his reward? Hearing people laugh.

Kindness is a language that the deaf can hear and the blind can see and in that sense, Jax can see it but most importantly, he feels it.

Tina said,"It's not about us. It is that people are doing things for others and then giving the hearts to him so he can feel it. He doesn't know what a random act is, he just knows he is creating a lot of hearts and a lot of smiles."

..And just like the Grinch's heart that grew, so are Jaxton's hearts. A beautiful way to see the powerful of kindness.

If you would like to send a heart to Jaxton with your kind acts, send it to Orange Elementary in Waterloo.

6028 Kimball Ave.?

Waterloo, IA.

50701-9043
FB: https://www.facebook.com/jaxtonjourney
Website: http://www.jaxtonsjourney.com
6,081 views Jan 30, 2016
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Tina Schake Engstrom 550 points
Ellen, I wanted to let you know how much we would appreciate it if you would share Jaxton's story. His story is not just about raising awareness about Batten's disease and finding a cure (although that is the miracle we want more than anything). This story is more than that. I have always felt that there cannot be anything worse in life than losing your child. But it is what we do with the time that we have that matters. We choose to celebrate every moment of every day...even the bad ones. We have made a conscious decision to look for opportunites to make other people smile and laugh...in honor of Jaxton. That is what brings our family meaning to Jaxton's battle. Jaxton received almost 4,000 hearts from surrounding schools, the community, and across the globe. This was both humbling and empowering. Jaxton became a hero rather than the boy who can't see. That was a year ago. The hearts have since come down and been boxed up. But the change has remained. Jaxton does not remember the hearts that were on the wall at school. His memory has faded. But the culture of the school has changed and will hopefully remain that way. We have had the opportunity to meet many strangers that we now call friends. Jaxton has always wanted to visit California. But the truth is, it's not really because of you...he just really loves the movie Marmaduke who moves to California :) our apologies, Ellen! We would, however, appreciate the opportunity to share this incredible story that unfolded and continues to write itself. We are blessed and honored to have Jaxton in our lives and all the people who have done good toward others in honor of Jaxton. Sincerely, Tina (Jaxton's mom)
+33 votes
Feb 1, 2016
banest1 360 points
The encouragement Jaxton and his family have brought their family, friends and the community is awesome.  To be going through something so difficult and yet to share themselves the way they have is truly inspirational!
+21 votes
Jan 30, 2016
Tina Schake Engstrom 550 points
Thank you for always being here for us Tim!
Gram101101
Please Ellen, allow Jaxton to be a winner, he's a hero in our eyes.
+19 votes
Jan 30, 2016
Teri Trask 370 points
Jaxton has transformed the culture of Orange Elementary School in Waterloo, Iowa.  He and his family have taught all of us what it truly means to "Pay it Forward" - he started out wanting to help the Grinch's heart grow, but he makes each heart he touches "full" as he inspires us all to be better people and make the most of each day.  I will never forget the day he came up to me in the hall and asked if I had Jesus in my heart - he wanted to make sure Jesus could get in to our school so we created a special key for Jax.  We were riding horses one night (he is quite the cowboy) and he told me he felt like he was flying and wanted me to close my eyes so I could feel it too - a magical moment that I will never forget.  I am truly blessed and honored to be a part of "Jaxton's Journey!"
+18 votes
Jan 31, 2016
Tina Schake Engstrom 550 points
Our amazing principal and Jaxton's warrior. What an amazting ride this has been. Love you with all my heart!
anonymous
I have been BLESSED in so many ways to met & know this precious & gifted young guy; Jaxton & his family! AN AMAZING & inspirational kid who is FILLED with a heart so filled w/ laughter - loving - caring - sharing & living life to the fullest every moment of his life!! This is is remarkable in every way - they all love every moment because they are grateful for every smile - laughter & hugs shared! INSPIRATIONAL in every way! It's living life in the moment - because the heart feels love even when it can't be seen - it's TOUCH & FEEL the warmth of that GIFT which gives & receives unconditionally!! LOVE their 'courage & strength to take life one day at a time & sometimes one hour at a time!'  Love is felt from within - Jaxton feels love every day because he TRULY FELT the LOVE in his heart while he was sited; so that has never changed... ! HE FEELS in his heart - what some NEVER ever have felt - given!
+15 votes
Jan 30, 2016
Kelsey Hammer-Parks 360 points
+14 votes
Feb 3, 2016
anonymous
Many prayers for Jaxton....God bless Him!
+13 votes
Jan 31, 2016
grau.amanda 350 points
Jaxton is truly an inspiration.
+9 votes
Feb 2, 2016
Tina Schake Engstrom 550 points
Thank you so much from Jaxton and all of his family!
Kris Luck Hanson 320 points
This young man gives everyone the inspiration to thrive, given so many obstacles in life, he chooses not to dwell on his but to take care of others. I never knew about this disease until Jaxton and I was quite surprised to see so many bright beautiful lives affected by this.  Raising awareness is the key to finding a cure, Jaxton is hell bent on raising that awareness, his smile lights up a room, his ordinary day makes my bad day seem a lot better.  He deserves the chance to show the world his struggles and successes.
+8 votes
Feb 3, 2016
Tina Schake Engstrom 550 points
Thank you so much Kris. You made me cry!
Lisa Nolting 330 points
Jaxton is someone the world needs to know. His journey inspires me in little daily things that I have always taken for granted. He has taught me to do small things with great love. I know that with your help Ellen and the viewers we can raise great awareness for Batten's Disease and Jaxton and his family are so deserving of this!
+8 votes
Feb 3, 2016
Mary Jo Juel 320 points
I had the privilege of being Jaxton's preschool teacher.  He was such a fun, bright 5 yr. old who really loved to play on the playground.  His love of the playground proved to be a life saver for him because as his sight in his eyes continued to decline the sight in his heart and mind did not.  With much determination he was able to play on that playground from memory for many months to the astonishment of his teachers.  Jaxton and his family did not want him to become sight impaired, but God had a plan much bigger than anyone could imagine.  God doesn't make mistakes and He new that Jaxton would need a great support system so He gave him the best parents, brothers and extended family possible.  Because of Jaxton and his family they have touched many lives with love, random acts of kindness and by "Paying It Forward".  Jaxton is on a journey, but because of him and his family making this world aware of this awful disease (Batten's disease) he is not alone on this journey.  We all need to do as they do; live one day at a time and bring love, joy, smiles, laughter and kindness into this world.  God has truly blessed me with the privilege of being a part of Jaxton's life.  May "Jaxton's Journey" continue to touch many more lives!
+8 votes
Feb 3, 2016
Vicki Cutsforth 360 points
Please fulfill this young boys wish to come to California!  As an added bonus, meeting you would be a positive for this family and Orange Elementary in Waterloo!  Good luck to you Jaxton!
+8 votes
Feb 3, 2016
Teri Lynn 540 points
I have had the honor to get to know Jaxton,Brett, Tina, Parker and Preston. This is an AMAZING family.Our radio Station 93.5 The MIX became Jaxton FM for a day to raise awareness of Batten Disease. I do have to say that was the best day of my 30+ years in radio.I can relate in some ways..I was born with Spina Bifida and have been using a wheelchair since 2002. Growing up "different" than others is hard. Hard on the person AND family.Questions of Why?, Now what?. How will we pay for this? Multiple doctors appointments many miles away from home..test after test for your condition. And a test of strength. But you keep pushing forward. I will always remember a conversation that I had with Tina. Jaxton was having some mobility issues. I suggested that I might be able to get a wheelchair for him to use when needed. I saw the  sinking ("Iam not ready for this") look on Tina's face. I wanted her (and the whole world) to know..Being in a wheelchair is NOT a bad thing! It does not change who or what you are. It is just a different way to get through life.  Jaxton's Journey ( A different way to get through life) needs to be shared with the world. The Engstrom family are my HEROS.
+8 votes
Feb 3, 2016
Vicjeephal 290 points
This young man has reached out to not only our community but the rest of the state and the country!  Jaxton and his family have done so many acts of kindness. Where I work the women came together to do acts of kindness and then send the hearts to Jaxton at his school. Even when this little boy is in so much pain he thinks of others. He has touched my heart!
+7 votes
Jan 31, 2016
Cindy Schake 370 points
Jax is an amazing young man who has been blessed with the unique opportunity to inspire everyone he touches, even if they are someone he will never meet in person.  He has taught all of us that every day is a gift and that is something to celebrate.  Rather than focusing on the things that he can't do or see, he makes us all smile and laugh.  A hug from Jaxton can brighten anyone's day and make us realize how insignificant our problems really are.  He has more to complain about than any of us, but he never does.  He is truly a blessing and without a doubt, our special angel.
+7 votes
Feb 2, 2016
Patrice Lund Engstro 290 points
Jax has enriched our lives with his way of dealing with adversity. With a hop and a skip he remains smiling, singing and spreading love. He, his brothers and parents have chosen not to be victims, but to celebrate each new day.
+7 votes
Feb 3, 2016
Linda Wright Miller 360 points
This is the most amazing, loving family I have ever met! All three of the boys are caring and kind along with their parents. They show so much love and patience and support for Jaxton and they truly cherish and celebrate every moment they have together.  They are not looking for fame or recognition, only the chance to share their remarkable child's story.  I am thankful that my grandsons have them in their lives! Linda Miller
+7 votes
Feb 3, 2016
anonymous
As a Mom who's son is epileptic since the age of 17 -  his numerous seizures - injuries - ER trips; hospitalizations; medications - some times life can seem 'a bit more than you feel you can handle' & living one day at a time & sometimes just moment by moment is all one can do & 'just be there' for those we love! Giving up in not an option - you just DO THE BEST THAT YOU CAN in THAT VERY MOMENT! Sharing a HUG is the VERY best gift! I know that Tina (the whole Engstrom family) & I have a heart that is willing to 'GIVE BEYOND' what most would know & understand ...  'your heart  cares - shares & loves' unconditionally - no matter what! My son told me one time "Mom, I didn't ask for the seizures they came to me!"Sz's alone can scare so many... some way - they share Jaxton's Journey...  YET there is always a big heart to just 'give' & just be there! My heart is w/ Jaxton; his journey w/ Batten Disease as well as his whole family! Batten's Disease takes every day to make sure & cherish; one day at a time - sometimes just hour by hour! So very grateful of every smile & moment of laughter is precious gift - that is never taken for granite w/ the Engstrom family! One very deserving & truly amazing family no doubt! Jaxton gives so many 'courage' to take life & every day JUST one day at time - do the best that you can - when one can ....  ! remember that within the word DISABILITY is 'ability!  courage - kindness - loving  & sharing =  Jaxton & his / families journey ....  every day is a gift!
+6 votes
Feb 3, 2016
Tara S
Prayers for Jaxton and his amazing family.
+6 votes
Feb 11, 2016
Suzy Junk 410 points
I have known Jaxtons mom, Tina, since we were kids in 2nd grade. Coincidentally, Jaxton attends the same school where we met. It breaks my heart to see what is happening to her son but, also at the same time it is an amazing story. I personally never knew what Battens disease was until Tina explained it to me. I believe many, like myself, have no idea that this disease even exists or what it is. I believe his story is very inspiring and empowering. I couldn't imagine what he is going through or his family. The thought of losing a child is heartbreaking or knowing your life is going to be shortened at his age is devastating. The one thing about Jaxtons story that everyone should look at, is not the part of losing his life but, what he has done to celebrate his life, what the community has done and how he turns every moment into a positive. we can all learn from that. I hope that you take a look at Jaxtons story and choose him. I feel his story is one everyone should know and be a part of. Jaxton is a true hero and has touched my heart and the heart of many others.
+5 votes
Feb 3, 2016
Bobbie Jo Conkling 250 points
Please share. I'm from Ohio and have followed this little boys journey as I l9ve how the town I used to live in shows love for this child.
+5 votes
Feb 4, 2016
Becky Peters Anderso 260 points
Jaxton and his family are an inspiration. Most people, young or old, would dwell on the negatives of such a disease and there are many. But Jaxton has chosen to bless others through it. No doubt he gets this from his amazing parents.  Ellen I always love how you end your show by saying be kind to one another, well Jaxton lives that out every day. He could be your spokesperson for kindness!  Please share his story. Thank you.
+5 votes
Feb 4, 2016
Lynn Unsen
This is an amazing family that continues to show everyone love in strength in whatever challenge is put in their way. Truly a gift to everyone that knows them.
+5 votes
Feb 5, 2016
tdunker5 370 points
Jaxton- ....is Jaxton! Jaxton unknowingly touches lives in ways he will never completely understand. His innocence and desire to explore with his hands keeps us all on our toes to say the least whenever we are around him. He does not sit still as there is too much to do! He is full of energy and life, so you better be too if you are going to be around him. He shows no fear in his world full of unknowns. He is full of hugs and giggles. He is all boy- which includes the love of burps and farts! My daughter (his cousin) Ashley Duncan along with his parents, Brett and Tina,  have taken Batten disease head on. Instead of focusing on all of the negatives, they have helped Jax to create a world of hope and happiness. But it isn't just for Jax. They have found different ways to help Jax not only have new experiences, but to meet new people, and show them what kindness really means. By doing random acts of kindness, over and over again, it has created a new image for himself. He went from being the boy that other kids would just stare at, to proudly proclaiming when they see him now "Hi Jax!" He is popular at his school simply for being himself. By having great teachers, and staff, along with Ashley (also his para educator) and parents who helped to create ways to get other people involved by doing their own random acts of kindness, Orange Elementary School found themselves in a spotlight they never expected. The halls were full of hearts, to the point where they were running out of space to put them. His parents and Ashley may be initiating the ideas for him, but it is Jax who embraces the mission of kindness by bringing a certain magic-like feeling with him. When he is the one delivering a rose to a random stranger, or delivering cookies to nurses, etc, just seeing his face and knowing it came from him makes anyone days brighter. He is truly an inspiration. I love him like crazy- and yes I am his aunt so I may be biased, but oh well! He is a blessing to all! Help Jax explore the world! His time may be short, but his journey will be great!
+4 votes
Feb 11, 2016