Maddie's Followers

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!!

04/07/2026

Maddie and I were doing a little painting!! She wanted this big wooden turtle for Easter so she could paint it and hang it in her bedroom!! When she’s finished I’ll post another photo!

03/30/2026

She is an outstanding doctor!

Today is ! Join UMDF in thanking doctors like Dr. Rebecca Ganetzky, an attending physician in mitochondrial medicine at the Children's Hospital of Philadelphia.

Here’s what parents Howard and Ann Korsen said when asked what Dr. Ganetzky has meant to their family:

“Dr. Ganetzky is that rare physician who combines brilliance with humility and almost endless amounts of caring, empathy and compassion and candidness. She also does something most physicians don't do enough of - she listens intently and takes seriously what patients and their caregivers have to say. She has been a trusted member of our daughter Mara's medical team at CHOP for many years and we greatly appreciate the care she has provided for her.”

Is there a doctor who made a difference in your life? Tell us in the comments.

03/05/2026

Maddies new bedroom!!

Sadly over the past 6 months Maddies mitochondria disease has been affecting her brain. We have had some concerns with possible seizures, confusion, being more unstable and an overall decline in her abilities. Thankfully we have been in good hands with finding some solutions and help for her but it certainly has been a difficult hurdle for all of us.

We decided it best to move her bedroom from the 2nd floor to the living room to be closer to mom and dad’s bedroom and to the restroom she prefers to use. Plus, no more stairs! She’s mostly ok with the transition and seems to be thankful she doesn’t have to climb the stairs anymore to get changed or to go to bed.

Thank you for your continued prayers - we sure use them up!!

03/01/2026

Maddie is a big dill pickle on !!

Diagnosed with a single large-scale mitochondrial deletion (SLSMDS) that affects less than 100 people in the world (which causes multi system failure from Pearson Syndrome and Kearns Sayre Syndrome).