Maddie's Followers

09/11/2026

A huge thank you to Variety The Children's Charity for Maddie’s new adapted Rifton bike!! What a great organization doing wonderful things! I know this family sure feels blessed!! I mean, look at that smile!!

08/12/2026

As a special needs parent, I know firsthand how expensive adaptive equipment can be—and how quickly our children outgrow things.

This fall, we're launching the NWPA Adaptive Equipment Exchange, a free community event to connect families with needed equipment.

Right now, we're collecting gently-loved adaptive equipment, sensory toys, communication devices, and mobility items.

If you have items sitting unused in your home, we'd love to help them reach another family. Please message me or our page to arrange a donation!

https://www.facebook.com/profile.php?id=61584748263449

07/18/2026

30 years!

06/25/2026

We celebrate our own little DeafBlind Kiddo, our Maddie May!!

June 25 marks the start of Deafblind Awareness Week, celebrated every year during the week of Helen Keller's birthday. Now through July 1, we’ll share information about deafblindness and celebrate children who are deafblind and their families.

05/27/2026

What a blessing - Maddie turned 17 today!!

05/11/2026

SHE WENT TO PROM!!!

The idea of Maddie going to prom and dancing at a school dance was put in the “probably not going to happen” category a long time ago. That may have a negative vibe to it but in such a life of raising Maddie I have had to put things in such categories to be able to move forward. I mourn for life experiences she’ll never have, almost on a daily basis.

BUT…

But on this day I got to pull something out of that dreaded category and snap pictures while she got to experience it!!! What a true blessing!!

She was asked to prom by a sweet kind boy in the most creative way possible (he sang a song from Little Mermaid and worked the words to be a prom proposal, and even gave her a Flounder stuffy and a Dinglehopper (it’s a fork for you non-Little Mermiad Fans!))! He has been such a good friend to Maddie and always prays for her and her health.

She said a prayer before arriving at the dance. “Dear God, please help me enjoy my first school dance … she said more but I was bawling by that point and couldn’t remember what else she said.

She joined the girls for a photo and she was so please to be part of the crowd! Imagine that!

She danced, oh did she dance!! Maybe not a lot to most standards but for her - oh my!! She even had a slow dance!! I of course cried most of the time!! My heart filled with thankfulness!!

The evening was short as all the dancing tuckered her out pretty quickly. And though it was a short night it was a HUGE night for her and for us!!

I will forever be thankful for Jude and his family who helped us make this night magical!!

04/27/2026

Not exactly the wheels that an average 16 year old asks for but she was pretty pumped to pick out the aqua color!! It’s so so easy to push which makes this mom super happy!! And not to brag but it even reclines!!

04/27/2026

Brain tests to relaxing in her hammock! She cracks me up!

Tests showed her brain is the newest body part affected by Mito. Thankfully we aren’t changing any routines currently and will continue to monitor her needs.

She truly is something and what her body endures is simply amazing!

04/21/2026

!!! Announcement Announcement !!!!

There is no UMDF Walkathon this year in Pittsburgh. (Well there are things going on this fall but there isn’t a walkathon scheduled for early summer like there has been in previous years).

We are in the works of planning a walkathon locally in July. Stay tuned for details!

04/21/2026

What is going on in your brain Maddie? Literally we are gonna find out 🤣 24 hour EEG and stay at our most accommodating hotel for medical needs (also known as Children's Hospital of Pittsburgh of UPMC 🤣)!! She is such a trooper!!