Heidi's Hallelujah

07/28/2026

Heidi enjoying some bounce time before OT equipment evaluation. Goal this year is for insurance to accept a new car seat and bath chair for Heidi. We are looking at a swivel out 5 point harness car seat to make it easier for me to get her in and out. Right now I have to fold Heidi tightly so I don’t hit her head on the van while also making sure to not whack her hips on the car seat. The swivel out car seat will allow me to put Heidi in the seat, strap her in and then swivel her to proper position for riding. As for the bath seat, Heidi wants to shower but doesn’t want to stand up. This will allow me to safely shower her without falls or breaking my back with leaning into shower.

07/27/2026

I’m a little behind on posting. Heidi and her teammates had their baseball awards ceremony with a pool party afterwards. It was a bit windy and rainy that day but the kids all had fun. Challenger baseball is a huge blessing to all the kids in Mercer County. As you can see in group photo, there’s many kids that benefit with the program.

07/25/2026

Please pray for Phoebe and her family. Sanfilippo is absolutely miserable. The reality is, we aren’t strong. We just fight. All of us parents would take it from our children if we could. The heartache Phoebe’s family is going through right now, in this moment, is something all of us parents fear but know it’s our reality. We share because we need help saving our kids. We also share to bring awareness to how strong our kids fight and what it’s like being the parent of a child diagnosed with a terminal syndrome.

A little update on Phoebe 💜

I've struggled to write this update because, honestly, I don't think I've fully processed everything myself.
These weeks have been the hardest we've faced.

We've sat down with Phoebe's paediatrician, Doctors here who have dealt with Sanfillippo children before, who have known for her for years. It wasn't conversations full of false hope, nor was it one where anyone said, "This is the end just yet." It was an honest conversation about where we are.

Despite nearly finishing a long course of strong antibiotics, Phoebe hasn't improved in the way everyone had hoped. Her paediatrician shared her concern that this may no longer be simply a chest infection, but that we could be seeing the progression of her Sanfilippo syndrome affecting her breathing. Also with her scoliosis now starting to affect her neck and head, on top of her aspirating on her own secretions. It was incredibly difficult to hear because, deep down, it's something I've feared for a while.

We spoke about everything. Whether removing her tonsils and adenoids will actually make enough difference. Whether more invasive options, like a tracheostomy, would even be beneficial with the progression of her condition. I asked the question every parent dreads asking... what does this mean for Phoebe, and how long do we have?

There weren't any answers.

Those are conversations that now need to happen with the metabolic team.

For now, next week the plan is to finish the antibiotics, repeat her chest X-ray and carry out another overnight sleep study. Those results will help decide whether Phoebe can eventually come home with suction, oxygen, nebulisers and possibly CPAP to support her breathing. After that, we'll sit down with the metabolic team and discuss what comes next.

This journey has taken its toll. Emotionally, it's been the hardest weeks of my life. We're taking each day as it comes, hoping for answers while making the most of every moment together.

I want to say thank you.

To everyone who's messaged, checked in, helped with my Mia, and Milo, brought home cooked food, or simply thought of us... thank you. Even if I haven't replied, I've seen your kindness, and it means more than I can put into words.

Please keep Phoebe in your thoughts as we head into another important week. We're still taking this one day at a time, hoping for answers, and treasuring every moment with our beautiful girl. The doctors allowed Phoebe to come home for a couple of hours this afternoon, for family time and processing what her future now looks like 💜

07/14/2026

My favorite video from Heidi’s Make A Wish. While it may not look like much, Heidi loved feeling the breeze and enjoying the outdoors without the heat. Just this simple walk soothed her body and relaxed muscles to allow a good nights rest. The fresh moist air encompassed her lungs and allowed comfort. The smooth rocking from the waves helped her mind focus on her walking.

07/13/2026

Day 4 of Heidi’s Make A Wish was spent on sea. We watched Aladdin live in the theater. The kids all enjoyed swimming and splash pad. Dinner was at Arendelle with great singers and an interactive singing portion. Anna, Elsa, Olaf, and Christoff visited our table. Heidi also was able to get numerous character signatures and a private visit with Minnie Mouse. Minnie Mouse captivated Heidi and produced the biggest smile. We finished the day with a Bluey and Bingo PJ party.

07/12/2026

Day 2 of Heidi’s Make A Wish was spent at the Bahamas playing with dolphins at Atlantis. We all loved playing with the dolphin. We didn’t get to do much at Atlantis as it took a bit longer to navigate around the hotel/casino to find the wheelchair ramps and elevators.

Day 3 we spent at Disney’s Castaway Cay. It started out beautiful with swimming in the ocean and exploring. We did head back to the ship early as a storm system came through.

Both nights we ate at Disney Marvel restaurant. One night was pirate night, which we dressed up. The food was amazing. Night one was an interactive night where we had to work as a family hitting the buttons to navigate the system. Night 2 Spider-Man came out and met with the tables.

07/08/2026

Heidi’s Make-A-Wish took 2 years of planning. When we received her diagnosis at age 3, my brain instantly shut down and I heard nothing else said during that appointment. Heidi’s geneticist mentioned that she qualified for Make A Wish, however, I didn’t want to even think about it. I pushed it aside and said no. In reality, I just needed time to process what my little girl’s body was going through. Even to this day, each change Heidi goes through is another moment I grieve. The process will never stop. Sanfilippo is brutal. No matter how hard Heidi fights, her body is going through pain.

Make A Wish trip was something we all needed. To spend time as a family without appointments and daily scheduling and researching. We all needed time together without the noise.

Day 1 of our trip was a little chaotic due to traveling and feeling overwhelmed with numerous feelings. However, we got through it together.

Side note: Heidi broke one of her hearing aid processors on the Disney Cruise Line bus to the Wish ship. We are also very grateful for the wheelchair lift on the bus as Heidi does not sit still without a 5 point harness car seat system.

07/05/2026

This past week we embarked on Heidi’s Make A Wish trip. There were a lot of emotions leading up to her big trip from each of us. While we won’t get into the specific emotions at the moment, please know Make A Wish is extremely patient with each family and allows the families to take their time with processing.

Today I’m going to focus on Heidi’s biggest enjoyment this past week. Heidi was able to meet her favorite, Moana. Plus she met many princesses. They danced and hugged numerous times.

06/26/2026

Last Saturday evening, Heidi and all the other challenger baseball little leaguers had the chance to play baseball with the Grand Lake Mariners. These college baseball players from all over the United States went above and beyond for the kids. They showed up with passion and patience to help navigate every little leaguer through each obstacle. It meant the world to all the family members watching. If you have the opportunity to meet these players, make sure to thank them.

06/22/2026

Good luck Tarheels! Rooting from Ohio.