Just last month, 5-year old Ezra received an adaptive stroller and a communication device through Variety’s programs, and this week, we received a VERY SPECIAL update from his mom, Caitlin, who proclaimed on Facebook,
“Best Mother’s Day ever. For the first time in years, Ezra was able to join our family our at a restaurant to eat with the help of his new adaptive stroller. He sat at the table so nicely and I was so proud! So many little victories I’ll never take for granted!”
Caitlin also told us that Ezra has made significant progress in the past month with his new communication device, “Out of the silence, the roaring lion! Ezra is starting to talk! Years and years of prayers and waiting and prayers and crying and prayers and hoping and prayers and pleading.
My. Ezra. Is. No. Longer. Silent. He’s trying with everything in him to repeat my words and sounds. This is just the beginning. Because of the communication device, you should see the joy on Ezra’s face when he knows he is being understood!”
To get a feel for Ezra, I thought you might enjoy this very quick video to appreciate how speedy Ezra is in using his device —- his voice (click here to watch).
This update not only brings me sincere joy, but it fills me with a greater passion to do even more for kids like Ezra and moms like Caitlin because these MOMENTS MATTER.
Summer, age 5 from Fayette County not only received her new communication device, but she also got a new best friend – a Variety Buddy Bear.
Summer’s mother, Linda sent the below photo and said, “Summer had to have her bear strapped in the car seat like her… and they have been inseparable since.”
Linda also told us her hope for Summer’s new communication device,
“I believe this will help Summer to better communicate her needs.
Summer is a smart little girl, however, the lack of understanding of her speech within the family as well as when out in the community, makes it very hard for her to enjoy herself.
Summer’s Grandfather, for example, cannot make sense of more than 3 to 4 words she says. He cannot stay with her for long periods of time by himself, as he does his other grandchildren, due to the lack of unintelligible speech she has.
Summer also has separation anxiety when I must take her places. She requests that I stay with her if possible to make sure people including kids can understand her enough to where she is comfortable.
Overall, I feel if Summer receives a communication device, her self-confidence will significantly increase. I feel this will also help her with her teachers so that they can treat her the same as her peers.”
Summer is one more child who now has a voice – thanks so much for all that you continue to do.
Jace is 7 years old, nonverbal, and recently received a communication device AND adaptive stroller from Variety. The impact that these two pieces of equipment are going to have is incredible!
To give you a better idea, his mom Kim explained the challenges that are often hidden to us, but she and Jace live every day. I hope that you can read and take in Kim’s words, as they truly shine a light on what our families face, and how Variety is providing a bit of hope along the way.
- Kim told us, “I cannot communicate with him. He cannot tell me even his most basic needs and wants. He cannot tell me if he is scared, if he’s in pain, if something is wrong.
- I’m at a loss… whoever thought it would be this hard. It’s so frustrating as a parent. Everything gets put on hold. Because of his physical challenges, I don’t even know what he can and cannot do because he can’t tell me.
- Receiving the communication device gives me hope. Hope that I’ll be able to understand what he understands. Hope that he can communicate what he’s struggling with so that I can help him. Hope that I will truly be able to understand him… I worry about what I do not know.”
Kim also went further to tell us how the adaptive stroller would make a significant impact,
“I cannot take him as well as his 3-year old typical brother out because if one of them gets away from me, I can’t leave the other to get him. It is not just exhausting, it is scary. Jace is also getting too heavy to lift. The stroller will enable us to go out and participate in the community. It is terrible to be isolated, especially in the winter.”
Our work is certainly not the solution to all of life’s problems, but I feel privileged that we can provide such life-changing equipment to these amazing kids and their families. It is giving them a bit of HOPE to keep going and strength to push through the challenges that they face each day.
This past January, we presented 4-year old Owen with a communication device in Altoona. Owen has autism. Less than a month later, we received a note from Owen’s mom Jessica. It is another reminder of the things that we all take for granted are major moments in the lives of these families.
Jessica said, “I just wanted to share with you a small joy we had this week. We have slowly been integrating the “my voice” device and Owen has taken to it when it comes to requesting food choices. I thank you from the bottom of my heart what seems like such a simple task for a child is something my son struggles with daily. This gives me hope that he will take to it to request items to play with, etc. Thank you for giving this mother hope!”
These moments might not appear as significant to many, but for our families (and us at Variety), it’s the small moments that have the greatest impact. These moments of joy give our families hope.
Our “My Voice” Program and the impact it can have continues to amaze us all, and we want everyone to share in Jacob’s joy and that of his mother and brother on Valentine’s Day. The three of them joined us last week at a Press Conference to find more eligible kids.
Eilleen sent the following update to our CEO last night:
I was listening to your story about Mia and her brother using her iPad to ask Alexa to play Baby Shark. It took me 2 days to think how that could help Jacob.
Well, today I figured it out! We have a voice remote for our T.V. Jacob tries, very unsuccessfully most of the time, to tell our remote what he wants to watch. I thought of an idea. Why don’t we program Touchchat with pictures of all his favorite shows. Now he can use his iPad to ask the remote to turn on his favorite shows. Evan was able to help with finding pictures of all of his favorites.
When we sat with him to teach him how to do it, he was so excited. The first thing he wanted to try was the Penguins logo! Sure enough, he got what he wanted. Now he is watching the Pens beat Edmonton!!!
Thank you for all you do for our kids.
Then, she e-mailed this 20-second video, which shows Jacob using his communication device for the first time to get the Penguins game on TV independently!
Jacob’s JOY at being able to do this himself is a reminder for all of us that this is very special work that we’re engaged in. We are giving kids the opportunity to do for themselves, the very things we take for granted.
P.S. On this Valentine’s Day, a day of love for one another, Eileen shines as an example of the love all our moms have in their hearts for these extraordinary children and youth.
“We want to give EVERY eligible child a voice.”
I wanted to send you this link to watch the KDKA-TV piece from yesterday’s Press Conference, which focused on giving a voice to every eligible child that’s in need in partnership with United Steelworkers and Highmark – https://pittsburgh.cbslocal.com/2019/02/05/variety-expanding-access-to-speaking-device-for-special-needs-children/.
As you watch the video from yesterday’s Press Conference, I’m sure you will agree with me that Tyler, Jacob, and their families are our TRUE HEROES. They made the time to be there yesterday and share themselves so authentically in the hopes that other children would receive communication devices.
As many of you may know, yesterday was also my birthday.
Over the years, I’ve saved every birthday card that I received Fred Rogers, and he always wrote, “I’m so very glad you were born.” As I reflect on the work Variety is doing and on yesterday’s Press Conference, I wanted to say to all of our Variety Friends that I’m so very glad that Tyler and Jacob were born – two Variety Heroes.
At Variety, we another quote from Fred Rogers as our tagline, “Anyone who does anything to help a child in this life is a hero to me.” I couldn’t imagine a more meaningful birthday than spending it with Tyler and Jacob, who are helping more kids find a voice of their own.
Less than a month ago we presented 4-year old Owen with a communication device in Altoona. Owen has autism. This morning, we received a note from Owen’s mom Jessica. It is another reminder of the things that we all take for granted are major moments in the lives of these families.
Jessica said, “I just wanted to share with you a small joy we had this week. We have slowly been integrating the my voice device and Owen has taken to it when it comes to requesting food choices. I thank you from the bottom of my heart what seems like such a simple task for a child is something my son struggles with daily. This gives me hope that he will take to it to request items to play with, etc. Thank you for giving this mother hope!”
This story is truly a Christmas Miracle that I hope you’ll watch and share with others to spread the holiday spirit. Last night, KDKA-TV and Kristine Sorensen featured the extraordinary progress that Tyler, age 7 has made in going from no voice of his own, to a communication device, to speaking with his very own voice – https://www.kidsburgh.org/boy-with-autism-finds-his-voice-thanks-to-special-ipad.
Variety is blessed to be a part of this “Christmas Miracle” as KDKA said, and Tyler has truly changed our lives for the better.
This holiday season, Variety had the chance to present more than 80 pieces of adaptive equipment during 5 presentations to kids with disabilities, and it was pure JOY, JOY, JOY!
In partnership with the Central Intermediate Unit #10, Forbes Hospital, PlayWorks, Range Resources, and Saint Vincent Hospital, we presented 35 adaptive bikes, 15 adaptive strollers, and 32 communication devices (worth $123,900).
Here’s a few highlights to smile along with us!
Zane received his new adaptive bike AND communication device during a presentation with PlayWorks in Morgantown, WV. His mom, Autumn described the bike’s impact simply by saying, “Zane loves being outdoors. He struggles with a regular bike, so he usually chases his sister rather than getting to ride with her.” Now, Zane will get to just be a kid and ride bikes alongside his sister.
For Brylee and her parents, a communication device will have a significant impact to daily life. Her mom, Candace told us,
“Though our daughter can be verbal, she really isn’t. When you ask Brylee ‘how was your day,’ or ‘what did you do in school today,’ or ‘what do you want for dinner,’ her response is usually silence. On occasion she will give you just a repetitive response she has heard a million times and what she thinks to be the appropriate response, but it’s mostly a one-sided conversation…which has been one of the most heartbreaking things.
Another big hurdle for us is not knowing what could be wrong with our daughter when she is sick, or when something is hurting her. When you have a child that just starts crying her eyes out for no reason, but cannot communicate to you that her belly hurts, or that she stepped on something and now her foot hurts because she has no way to communicate to you is very freighting.
Being able to know what is wrong with her when she is sick and being able to have more conversations with her that are no longer one sided is huge!”
After Noah got his new adaptive stroller at Range Resources, he and his mom were planning to take a stroll around the Mall at Robinson – something they struggled to do previously. His mom, Christine told us, “We can’t wait for Noah to get his stroller. It will make going to and from school so much easier. We will be able to go to the mall, out for walks, and to the amusement park without worrying about Noah running away. We will not have to strain so much carrying him as well.”
During our five recent presentations, we were grateful to have local media coverage, which will hopefully enable more kids to be identified and receive this life-changing equipment. Click on the links below to share in Variety’s “Tour de Joy”.
- Presentation with Forbes Hospital (Allegheny County):
- Presentation with Range Resources (Allegheny County):
- Pittsburgh Post-Gazette
Happy Holidays to you and your family!
This might be our most incredible video ever highlighting the impact of Variety’s “My Bike” and “My Voice” Programs.
Once again, Variety was given the opportunity to speak to hundreds of labor leaders from around Pennsylvania this week. These labor leaders were deeply moved by the video (video above) and committed to doing even more for Variety. Plus, we were presented with a $3,000 check to sponsor another bike and device!
The experience was especially meaningful for USW District 10 Director, Bobby “Mac” McAuliffe, who rode an adaptive bike into the conference to great celebration by everyone in attendance (photo above). It was great for the attendees to see the USW Director for Pa. ride an adaptive bike and to realize how important the bike would be if it was their child or grandchild.
We are overwhelmed with gratitude by the support, commitment, and time that has been given to Variety and our kids, but we know how much more is still needed. Let’s keep things rolling forward, together!