Maddie's Followers

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).

02/27/2026

02/03/2026

Maddie would like to interrupt your scrolling to show off her colorful tie dye she made! I am thankful to report we are coming out of a hard season and she’s finally getting the sleep she’s been lacking (or I should say we all have been lacking). I hate changes and new meds but boy it makes a difference when you find something that helps!! And as always, we appreciate all the prayers!! Thank you!!

12/16/2025

It was so cool to hear them talk about mitochondrial disease on this show. Sorta blew me away!

Mito families might have a keen interest in last week's episode of the medical-mystery drama Watson on CBS, set in our very own Pittsburgh, PA. Replays of the show are available on Paramount -- Season 2, Episode 9. SCROLL FOR SPOILER.

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WATSON, Season 2, Episode 9 / CBS / Air date 12-8-25
Laila's shy neurodivergent teenage son Micah (Chase W. Dillon) has developed a dependence on his AI chatbot called Shannon whom he imagines as a human figure resembling actress Shannon Purser. A stunt he pulls to ask his crush Bex (Juliette Hawk) out to the school formal, goes poorly and he is embarrassed. He notices a change in Bex's gait, and after a search for clues at her house leaves him hospitalised at UHOP with a fractured arm, Watson brings in psychiatrist Dr. Ivan Ferry (John Cassini), who is also Ingrid and Beck's group therapist, to consult. While cross-examining Bex, who suffered a recent head injury, she vomits and collapses due to a subdural hematoma, undergoing surgery to reduce the swelling. She has another seizure, with the cause attributed to Leigh syndrome, and is successfully treated. Micah is weaned off Shannon's influence, Shinwell continues to connect with Nurse Carlin, and Stephens asks Dr. Ferry to be his therapist.

11/14/2025

“Why are you laughing so hard? What’s so funny?”

This is what I asked her as I pulled away from the store - she had stayed in the car as I ran in for one item. Before that we had gone to the chiropractor then treated ourselves to drinks - tea for her, coffee for me.

She could barely talk she was laughing so hard! Eventually she was able to tell me that while I was in the store she snuck a drink of my coffee!! That was it!!

Oh my, this kid! Her joy is contagious, infectious even! We both needed this laugh! I was in tears laughing thinking of her trying to “sneak” anything - she’s slow as molasses and her hand tremors are terrible, and she doesn’t have much sight anymore! Oh how I would have loved to watch her “sneak” my coffee! But watching her laugh was a gift! Sadly the effects of her mitochondrial disease have moved to her brain 😞. She will begin a medication to slow, or maybe lessen, the seizures. It’s been a complicated few months but I am so grateful we still laugh. I mean, when she’s laughing this hard it’s hard not to join in!!

Thank you for your continued support and prayers!

11/01/2025

Pray for Zoey as she begins a journey having Pearson’s. Was so great getting to meet this family!!

11/01/2025

Happy Halloween from Stitch!!

10/17/2025

I'm a little delayed in posting but Mike's bike ride fundraiser raised $1,000.00!! Thank you all so very much for supporting him. He made it 83 miles from Erie, PA, north to Dunkirk, NY then south to Corry, PA. Thank you thank you thank you!!

09/28/2025

Thank you for following Mike’s Ride to Raise Awareness. His body told him he was done in Corry, Pa. He was disappointed to have to call it quits. We quickly reminded him that he did more than most for a cause that’s bigger than himself and to honor Maddie. He finished at about 83 miles! Still very impressive! We are proud of him!

Here are a few photos he took along his ride!!

09/28/2025

First, of 3, segments complete (approx 53 miles)! Recharging at a delightful resturant in Mayville, NY.

Raising Mito Awarwness - https://umdf.org/

Raising funds - https://account.venmo.com/u/stew005