Ben & Finn

We are very excited that Benjamin and Finnley were both approved for selective dorsal rhizotomy surgery!

Selective dorsal rhizotomy (SDR) is a type of neurosurgical procedure used to treat spasticity. Spasticity is a condition in which muscles contract uncontrollably and remain tight. It results in pain and decreased range of movement.

This surgery can be life changing for the boys and increase their physical independence in the future! Just knowing they will not be in pain anymore bc of their spasticity is such a relief.

That being said this journey the boys are about to embark is going to be pretty expensive. The surgery is not fully covered by insurance so we will have to pay a few thousand dollars for each of the boys out of pocket. Other expenses would be new strollers for the boys since they do not have wheelchairs yet and need single strollers, atleast 3x back and fourth to St. Louis airfare,car rentals, airb&b, and meals.

Most of you have followed the twins story since day 1 and we are so grateful & thankful for each and every one of you.

It truly takes a village and we are so happy you are all apart of it

we can’t wait to share this next chapter in the boys story with all of you!

#SwillyStrong

Swilly twins back story: 

Ben and Finn were born at 24 weeks. Ben 1lbs 15oz and Finn 2lbs5oz. The odds were stacked against them. We were actually given the option to end care on Ben and let him pass away but we chose to fight for him. We had the “NICU rollercoaster” experience. We had some great days and some days I wish I could forget but are scared in my mind forever. Finnley spent 122 days in the NICU and Ben 189 days. Since those days the boys have had countless hospital stays and both have had multiple brain surgeries. They were diagnosed with Cerebral Palsy at 1.5 years old. We have been working so hard with therapy and medications to help them with their tone (tightness) they were getting Botox treatments where they were stuck with numerous needles at a time; and on 3 diff types of medications 3x a day to help manage their pain and movement from their Cerebral Palsy. 

When we started looking into SDR it seemed like an amazing option for the twins. So I filled out the pages and pages of paperwork, got the multiple referrals, took them for a lot of imaging, had their PT fill out pages of information for just a chance to meet with this world famous surgeon in St. Louis. Thankful we got the call and both boys qualified for a in person consultation with Dr.Park! This still didn’t mean they qualified but it was a step in the right direction. We booked our fights and went to the appointment with him and his team. Both boys qualified for this life changing surgery! Brandon and myself literally cried in his office because finally we found something that could help with our children’s pain and constant frustration bc their bodies don’t work like they should. It was the best feeling when he gave us some hopeful predictions of what the boys will look like after surgery and therapy.  

And that leads us to today excited, hopeful, and thankful