Avery’s Army

05/14/2025

Wear your Avery shirt or purple tomorrow! Tag us in your pics. 😊

03/11/2025

Hello everyone!

We have a new t-shirt design!! I had a few people reach out and ask if we were doing shirts again, so we delivered! The store is open until March 25th. A portion of each shirt goes to research to support Morquio Syndrome. 💜

As for an update on Avery, we have been having a really good year! All of her appointments and tests came back normal this last fall including cardiology, genetics and ENT. We see an ophthalmologist in March, sleep study in April, then back to genetics and ENT in August.

We have scheduled Avery’s first orthopedic surgery this coming September. We will fly out to Delaware for this to Dr. Mackenzie and his team where they will operate on Avery’s hips, knees and ankles. We will also follow up with neurology while we are in Delaware. It will be tough, but Avery is tougher. Please consider ordering a shirt to help support Morquio Syndrome. 💜

09/19/2024

Delaware trip number ✌🏼 in the books!

Our appointment went well. Avery will need her big hip/knee/ankle surgery between the ages of 5-7. She will have to have a cast from hips to ankles for 6 weeks and be non weight bearing. This is to create a hip joint and continue to keep her walking longer and help with pain. Unfortunately, these are things that has to happen to keep our busy girl on the move.

The next time we come will most likely be for surgery, but that’s to be expected with her diagnosis. Thanks for the prayers, texts, calls and good vibes for our trip. Back home tomorrow!

05/29/2024

https://averysarmy2024.itemorder.com/

If you want an Avery shirt, click the link and order! Store closes June 4th 😊

Online ordering for Avery's Army Fundraiser 2024 ends on Tue, Jun 4, 2024 (12:59 AM CDT)

05/21/2024

Last week was such a success for MPS Awareness Day! Here are just a few pictures of people supporting Avery. She truly felt all the love!

I had so many people ask if they can still order shirts for Avery, so I am opening up a store through Tags Screen Printing in Marshalltown. You can either pick up or have it shipped. There is still a portion being donated to Morquio research. Click the link below to order and tell your friends! 💜

https://averysarmy2024.itemorder.com/

04/23/2024

This is just a reminder that MPS Awareness Day is Wednesday, May 15th! So please wear your purple and if you think of it, post a picture with 💜

Avery has been doing so well with her infusions! We see our nurse weekly who comes and accesses Avery’s port for her enzyme. This is infused over about 4 hours.

She just about has her first year of preschool wrapped up! She loves school so much and seeing her friends. She is ready for 4 year old preschool next fall! Coming up, we meet with ENT and do another hearing test to see if she has mild hearing loss in her left ear. In July we do our yearly tests with cardiology and our geneticist. In September we head back out to Delaware to see Dr. Mackenzie for more X-rays. This is just to check the progression of the disease to see if she needs any surgeries coming up. We are heading towards another busy summer, but we are oh so ready! ☀️🌸

03/26/2024

We raised just under $1,000 to donate to the MPS Society for research for Morquio Syndrome! Thank you all for supporting Avery💜

03/16/2024

Bracelets are DONE! 💜

If you have yet to pay, here is Kara’s Venmo. The last 4 of her number is 6679. If you don’t have Venmo, PM me and we can figure something out. I will hand them out and/or mail them this week. 🫶🏻

Adult: $24
Child: $20

03/09/2024

One year ago we began the process of Avery’s diagnosis at her 3 year old well child check. It started with a chest X-ray and unraveled from there searching for answers. The fear of the unknown is something I hope other parents never have to go through. We didn’t know what Avery’s future looked like. Fast forward a year and we got all of her baseline tests, her port, started enzyme therapy, made countless trips to Iowa City, and a trip to Delaware to meet with a specialist that will do all of Avery’s future surgeries.

Over the course of a year I have followed quite a few families with a Morquio child/children. It’s a community we never knew existed, but are so thankful to have other people to go to for advice and to know they know what you’re feeling. I came across an awesome video of Robert and his family explaining Morquio and the physical challenges is possesses. Listen, learn, donate. These kids deserve it.

https://rootingforrobert.org/blog/rare-disease-day-2024/

We are hoping bracelets will be done soon and I will get them to you all as soon as possible! Thank you all for the love and support over the last year, and for years to come. 💜

Thank you to KET (Kentucky Educational Television) for spotlighting Robert and our journey with Morquio Syndrome. For those of you who missed it - you can now watch the segment here.