A New Discovery for Jacob — don’t miss his joy!

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.

Jacob is pictured above with his mother Eileen and brother Evan.

Eilleen sent the following update to our CEO last night:

Charlie,

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.

Eileen

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.

OUR HEROES | Tyler, Jacob & Their Families

“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/.

Pictured above is Tyler and me from the Press Conference.

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.

Pictured above is Jacob (all smiles) with his brother Evan and mom Eileen surrounded by Deb Rice-Johnson, Variety Board President & Highmark, Inc. President / United Steelworkers International President Leo Gerard / and me.

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.

Joy & Hope for Owen & His Mom!

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.

Luke is pictured above with his mom.

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!”

Tyler’s Voice: “A Christmas Miracle”

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.

Tyler is pictured above with his sisters, Sienna and Ariel visiting Santa!

JOY, JOY, & MORE JOY – something to smile about

Miles of SMILES!

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 is pictured above “all smiles” with his family on his new bike and showing off his new device.

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.

Brylee immediately began checking out her new device (her new voice).

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!

Noah is pictured above feeling comfy in his new stroller.

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 Range Resources (Allegheny County):
    • Pittsburgh Post-Gazette
    • WTAE-TV

Happy Holidays to you and your family!

Most Incredible Variety Video EVER!

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!

34 More Kids Are Finding Possibilities!

34 More Kids Received Life-Changing Equipment. Something that will help them find greater possibilities for their own lives!

Connor, age 8 is pictured above with excitement on his new RED adaptive bike!

“Connor would love to go bike riding with his two brothers in the neighborhood. This bike will make him feel like a normal boy who has his own bike. He also received an adaptive stroller from Variety, and it has made life a lot easier. We can go anywhere, and Connor doesn’t feel uncomfortable like he does in his wheelchair because people point and stare.” -said Debra, Connor’s grandmother


This past Wednesday, July 25th, Variety presented 34 more pieces of adaptive equipment to kids with disabilities at the Pittsburgh Mills Mall hosted by Blackburn’s.

These children (like Connor) now have an opportunity to discover EVEN MORE possibilities for their lives, and be a kid, first and foremost.

Ryan, age 17 received an adaptive stroller and communication device on Wednesday.

Ryan is pictured above left with his best friend Jacob a Variety Ambassador. Ryan shakes Jacob’s hand in joyful surprise that he’s in attendance at the presentation.

It was a surprise for Ryan to see his best friend, Jacob at Wednesday’s presentation, but the two couldn’t have been more excited. They both play for the Mighty Pens sled hockey team, and Jacob has been volunteering his time as an Ambassador to Variety to help impact more kids.

Ryan’s mom, Sue described what this equipment would mean by saying,

“With this stroller, Ryan can go out with his siblings without mom, or with extended family or friends who don’t have an adaptive van to transport his wheelchair. He’s going to be 18 soon and he wants that. The device will also make a huge difference. Our family has gotten very good over the years with understanding him, but Ryan can now tell us why he’s feeling the way he is or be able to ask us questions. There was no way before for him to do that.”

To make the day even more special, Ryan used his new communication device immediately on Wednesday to talk to his best friend, Jacob.

You can watch what Ryan had to say by clicking here.

Here’s to even more smiles and possibilities rolling on through the summer months!

   

Janessa Shared Her “New Voice” Before 15 Kids Received Equipment!

On Friday, March 23rd, Variety presented life-changing equipment at the Capital Area Intermediate Unit (CAIU) to 15 local kids with disabilities with each piece individually tailored to meet their needs.

Prior to our presentation, Janessa, age 11 kicked things off by demonstrating how she uses her communication device – her new voice – that she received from Variety last November.

Janessa is pictured with her mom and Variety’s CEO.

Since receiving her device, Janessa has been featured in two television spots through Highmark’s Living Proof campaign, one in which she uses her device to talk with her doctor for the first time, and then another to order food at a restaurant for the first time.

One of the most meaningful moments of the event was hearing Janessa’s mom, Julie update us on the progress and impact that has taken place for Janessa, and ultimately, her entire family since receiving her device (her new voice) – click below.

To give you even more to smile about, thanks to Janessa, three of her classmates received communication devices as well, including Ryan, age 9, who was more than a little excited.

Ryan is pictured above with his mom holding his new voice!

His mother, Monique gave voice to how life-changing this device would be by saying,

“Ryan’s greatest ability is his love of reaching out to people and attempting to communicate his wants and needs. He often launches into very long and animated stories complete with hand gestures and big laughs. Unfortunately, his educators, classmates, and many loved ones cannot understand him because they are his own made up words and not real words.

Ryan’s life would improve exponentially with a communication device. As a parent, its heartbreaking to see this deficit. We truly believe a communication device along with hard work on our part, Ryan’s enthusiasm and this device could change his entire social, educational, and emotional lifestyle.”

The March 23rd presentation also featured a terrific “equipment parade” with cheers of celebration that I’m sure you’ll enjoy – click here to watch for yourself.

A Day to Remember in West Virginia

To our knowledge, history was made yesterday in Morgantown, West Virginia for kids with disabilities.

In one afternoon, Variety hosted the largest presentation of adaptive equipment for children with disabilities with 45 kids receiving equipment (worth more than $70,000) – including 26 adaptive bikes, 8 adaptive strollers, and 11 communication devices.

Above is a photo from the Dominion Post that appeared on the front page of The Dominion Post!

As we have all come to experience, the kids were truly the stars of the show, like Deklan, age 7, who couldn’t have been more excited as he continually gave “thumbs up” in response to getting his brand new blue adaptive bike!

Deklan gives two thumbs with pride standing next to his new blue bike!

His mother, Tiffany said with tears,

“Deklan was born at 24 weeks weighing 1lb, 3 oz. and spent close to six months in the NICU. He’s had 5 eye surgeries, a heart surgery, blood transfusions, and he was on oxygen for the first year of his life… he’s been through a lot with many of his surgeries being lifesaving. However, today is a milestone day for Deklan, as he will have his own bike and experience the freedom of riding it, and gain the confidence and the security that he needs to do so on his own.”

Another highlight yesterday was two teenagers, Hannah and Macey, who are best friends.

They did not know until they arrived at the presentation and saw each other that they were both receiving an adaptive bike of their own.

Pictured above is Hannah and Macey – all smiles!

Hannah received a blue bike and Macey a pink one, and they spent the afternoon jumping up and down with joy, hugging each other, screaming with excitement, and telling their parents about all the bike riding they were going to do together. They even got to enjoy the bike parade together.

I wish everyone could have been there to see this phenomenal moment of joy that these two best friends shared – we are so fortunate to be a part of it these beautiful moments.

Check out these three news pieces that came from this beautiful day.

Can you help us spread the word?

Variety – the Children’s Charity of Pittsburgh is striving to identify & serve every eligible child that could benefit from its adaptive equipment programs.

Do you know of any children with disabilities that could benefit from an adaptive bike, adaptive stroller, and/or communication device? Variety is currently serving kids in 54 counties in Pa. & WV.

These programs are life changing for kids & their families, but Variety needs help with spreading the word, so no family misses out on these opportunities.

Visit www.varietypittsburgh.org or call their office at 724-933-0460 to learn more or apply. These programs are no cost to eligible families, and you can apply for one, two, or all three programs if your child can benefit!

Madon is all smiles on his new blue bike!
Destiny is feeling comfy in her new adaptive stroller!
All smiles holding his new device – his new voice!