Do It For Declan: Cure Sanfilippo

03/11/2026

Last week, Declan participated in the Special Olympics. The basketball events are his jam! He won the bronze medal. Way to go Dec man 🙂

02/12/2026

We Do it for Declan. We fight for a cure for Sanfilippo syndrome. Now, we also fight for a cure for Type 1 diabetes.

At first, I wasn’t sure I should share this post from my own fb page here, on Declan’s page. But I am an advocate, for both of my children. We have always worried about Declan’s younger brother, Zane. Does he feel seen? Is he happy? How is he coping?

Well, life is a mother fu**er. Last Friday, on Declan’s birthday, Zane started vomiting. It was a rough night. Saturday we took him into urgent care and he tested positive for Flu A and Flu B. Double whammy. The doctor gave him some zofran and Tylenol and sent us back home. We tried to keep fluids going but he wasn’t able to eat. Saturday night he was exhausted and wanted to sleep.

In the middle of the night, he needed help walking to the bathroom. We thought he was really weak from not eating for over 36 hours. Sunday morning we brought him into the living room to try to get him some food. He was lethargic, pale, and breathing rapidly. It didn’t seem like just symptoms from the flu. John took him back over to urgent care. They recognized he was in distress and began treating him. He was then transferred over to Children’s by ambulance.

At the PICU, his glucose was 796 mg/dl, his pH was 7.01, and he had extremely high ketones. He was in severe diabetic ketoacidosis. Apparently a virus (like the flu) is usually what triggers rapid on set.

It was bad. It was scary as f**k. He was on IV fluids, electrolytes, and insulin. It was one of the longest nights of my life. He was stabilized and spent most of Monday in PICU. They confirmed Type 1 diabetes. Late afternoon, he was moved down to the endocrine floor. The doctors adjusted his insulin and he received his continuous glucose monitor. He was finally able to come home on Wednesday night.

He is so strong. So brave. He has been through so much and we have a tough road ahead. We are all learning how to navigate this new normal. I wish more than anything that I could take this from him. I’ve always worried about his wellbeing and mental health because of Declan. Having a sibling with Sanfilippo is extremely difficult. But now, what do I do? Now he has this ever present diagnosis that impacts every second of his life.

Seriously, what the f**k?! Life really isn’t fair. The stress and emotions are overwhelming. For me, for him, for John. I’m trying not to lose my s**t but it’s hard. I’m so angry at the absolute unfairness of it all. Why him?

The doctors said there was nothing we did wrong. Nothing that could have been done to prevent it, but that doesn’t help. I am back in the diagnosis again. Back to when we learned about Declan. Back to the pain, the grief. When will it stop?

I know it will get better. It will never be easy. It never has been.

01/31/2026

Happy birthday to our Declan! He is 12 years old today! We love you to the moon and back! 💜🦄

12/26/2025

Merry Christmas! Wishing you joy and holiday cheer ❤️

12/14/2025

Our 4th Annual Do it for Declan Fun Run and 5K was a success and our hearts are full of gratitude.

Thank you to our sponsors: Jal Dennis Group, Quality Care Pharmacy, Exco Resources, and Nelson’s Contracting Services for believing in this cause and making this event possible.

Thank you to Frios Pops and Dutch Bros for your generous in-kind donations, to Brad Walsh (B&E Photography) for donating your time and talent, to Camp Gladiator for being a fantastic vendor, to the Grinch for bringing grinchy cheer, and to the Southern Dawgs Motorcycle Club for kicking off our fun run in such a special way.

Thank you to Doodle Desert for creating our shirts, to every volunteer who gave their time, and to everyone who walked, ran, cheered, donated, and showed up for our family and for Declan. Your support means more than we can ever put into words.

We are deeply grateful to this community for standing with us as we fight for a cure for Sanfilippo syndrome. Together, we raised $12,200 for the Cure Sanfilippo Foundation, totaling over $72,000 (for all events from 2022 - 2025).

Race results and photos will be posted on our website soon (https://www.doitfordeclan.com/) along with information for our next event in 2026!

12/12/2025

Register now for our 5K and Fun Run event tomorrow! Online sales end at 8pm. Same day registration will be available. Help us find a cure for Sanfilippo syndrome. Founders Park (851 Hensley Lane, Wylie). Go to https://www.doitfordeclan.com/ for tickets and more information.

12/08/2025

Late Monday, the U.S. House of Representatives passed the Give Kids a Chance Act (H.R. 1262)! A central component of this bill is the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program. The next step is for the U.S. Senate to take action.

Urge your Senators to support the PRV Program and Give Kids a Chance Act of 2025 (S.932). Take two minutes and send a message to your U.S. Senators using EveryLife Foundation for Rare Diseases’ action alert tool:
https://everylifefoundation.quorum.us/campaign/110385/

The PRV is an incentive (provided at no cost to taxpayers) that allows a pharmaceutical company to receive a voucher for expedited review for a future drug application if they successfully develop and gain approval for a treatment for a rare pediatric disease; essentially, it encourages companies to invest in developing treatments for children with rare conditions.

12/07/2025

Less than a week until our 4th Annual Do it for Declan 5K and Fun Run!!!

It is the season for acts of kindness, compassion, and generosity. Together, we can make a difference! Join us on December 13 at Founders Park (851 Hensley Lane, Wylie TX).

Register now and help us in our mission to cure Sanfilippo syndrome. Go to https://www.doitfordeclan.com/

All proceeds go directly to the Cure Sanfilippo Foundation, a non-profit that funds critical research for a cure for Sanfilippo, often described as children's Alzheimer's disease.

You can also donate to our cause on our website.
Save the Unicorns! 🦄

Fun run starts at 8:30am
5K starts at 9:00am (chip timed)
Photos by Brad Walsh, B&E Photography
Dutch Bros
Frios Pops

12/03/2025

Hope in every step 💜💜🦄

Join us for our 4th Annual Do it for Declan 5K and Fun Run, on December 13 at Founders Park in Wylie (851 Hensley Lane), as we race for a cure for Sanfilippo syndrome. Your support truly matters. Let's show what our community can do together.

All proceeds go directly to the Cure Sanfilippo Foundation.

Chip timed 5K, medals for all 5K finishers, CureSFF swag for fun run finishers, and race shirts included with registration (shirt size/availability not guaranteed after midnight tonight).

Sign up now at https://www.doitfordeclan.com/

11/27/2025

Happy Thanksgiving 🍁🦃

11/25/2025

A Cure Can't Wait.

On December 13, we are running for hope. Sanfilippo syndrome, a fatal disease in children, takes away everything.

Our 4th Annual Do it for Declan 5K and Fun Run is at Founders Park in Wylie (851 Hensley Lane). Every registration, every donation goes straight to the Cure Sanfilippo Foundation and real research for a cure.

If you ever wanted to make a difference, this is the moment. Your support truly matters.

You can register or donate at our website www.doitfordeclan.com

Please share this post.

Funding research for a treatment and cure for Sanfilippo syndrome. Do it for Declan 5K and Fun Run in December at Founders Park in Wylie, Texas and online silent auction.