Heidi's Hallelujah

01/10/2026

Heidi’s trying out her new princess AFO’s and Billy shoes. Our goal is to get Heidi to walk more flat footed. Without AFO’s, Heidi walks on the outside of her feet and toes. Most of the time her heels don’t touch the ground. This leads to unsteadiness and constant falling. If you see her normal shoes, the toes are all scrapped up and black because she catches her toes on the pavement. Heidi still walks with her feet pointed inward so we may have to add a strap to pull her feet outward. Best way to understand what Heidi is dealing with, walk on your toes all day long without heels to support.

This is one big challenge for all Sanfilippo kids. If we fix the issues, they will come back and could get worse. The Achilles tendons get tighter which leads to toe walking. This is why orthopedics, physical therapy, and physical medicine is vitally important for Sanfilippo kids.

01/03/2026

We spent Christmas and New Years enjoying some much needed quality family time. While we begin the new year, we hope everyone finds the positives in the hard times and celebrate the good times. Meet at least one new person who will push you to be better. Lean on your loved ones during the hard times. Above all, always give a hallelujah to our almighty God. Take it from this Mama fighting hard to save my joy filled spirited Heidi, I cannot do this fight without God holding me through the hard moments.

12/25/2025

Merry Christmas! Happy Birthday to Jesus! While we exchange gifts with our loved ones, we remember the best gift of all was the birth of our Savior.

12/13/2025

Heidi was so happy to see Santa this morning. I think Santa was quite entertained by Heidi’s spirit for life. Santa even said Heidi is more than welcome to help lift all the elves spirit this Christmas season.

12/11/2025

Heidi had a rough day that tonight she cuddled Bluey and told her all about it.

12/08/2025

One of Heidi’s sanfilippo sisters has a huge blessing initiative. Heidi’s brothers help us fight so hard. As a mama, I see Heidi’s brothers understand what sanfilippo is robbing their sister from conquering. Their unwavering love and support is beyond measurable. They know some days they are put on hold while we tend to Heidi’s needs, appointments, care and more. They don’t complain, they just understand. I’ve watched her brothers grieve at times knowing the future but I also watch them burst with joy at new skills Heidi learns. I know many of you pray for Heidi, please pray for her siblings as well. They may be strong in front of you, but their hearts break when Heidi goes through hard times.

From the inception of the Rowan Tree Foundation we identified the need to support siblings of Sanfilippo syndrome. There are many unseen sacrifices of growing up in the whirlwind of a Sanfilippo household, so providing these special siblings an outlet for personal pursuits is extremely important to our foundation.

Watching what our "typical" children endure on a weekly basis would be overwhelming for most adults, but their resilience, compassion, and patience is awe inspiring. We know that there are so many more incredible kids like Marley and Finn, so we want to recognize them for the remarkable people that they are.

Application Forms can be found on www.rallyforrowan.org and submissions sent to rowantreetn@gmail.com.

Application deadline is February 1st. Recipients will be announced on February 14th!

12/06/2025

This week has been a rough one on Heidi. She caught some virus and ended up feeling awful all week. Between fever, congestion, sore throat, coughing and belly ache, her poor body fought hard. Sleep happened in short stents due to congestion and coughs. Today is the first day all week where she has energy to play again. Heidi may still have congestion and coughing but she’s on the mend. I love seeing her smiling and laughing again.

Please, if you are feeling sick, stay home. Even if you think a simple run to the store wont hurt anyone, remember everything you touch leaves a trail for people to contract whatever you have. Immunocompromised kids stay sick longer and tend to get it worse. Thank you to those who stay home as we greatly appreciate you for helping to protect Heidi and all the other kiddos.

As for the video, turn up the volume. You can hear and see how hard Heidi was struggling to breathe with each breath.

12/02/2025

For giving Tuesday, please consider joining us in donating to the MPS Center to help give kids a chance at treatment. Imagine the difference for parents hearing there’s treatment options instead of no cure. A few dollars from multiple people goes a long way. Rare syndromes hardly get the funding needed and this is just one way to help all the kids like Heidi get treatment.

This Giving Tuesday, we invite you to support the Muenzer MPS Research & Treatment Center at UNC-Chapel Hill.
Your gift helps us:
• Advance research that drives new treatments and improves quality of life
• Provide specialized, compassionate care for individuals living with MPS
• Support MPS families through education, resources, and advocacy
Every donation—of any amount—makes a real difference for the MPS community.
👉 Give today: [https://www.med.unc.edu/pediatrics/muenzer-mps-center/donate/]
Thank you for standing with MPS patients and families this Giving Tuesday.

11/27/2025

Happy Thanksgiving! May today you remember all the great things that sustain your daily needs and those that bring joy to your life.