Help Us Get Jayse to Dr. Dobbs

My name is Kylee Jenkins and my husband Justin and I are starting this fundraiser for our son Jayse. Jayse is now 4-years-old and we are preparing to start the process for an anterior tibialis tendon transfer (ATTT) surgery on his clubbed feet. Starting this fundraiser is difficult for us because we are used to being able to figure it all out on our own with some help from family. For those who don’t know us, we are a family of 6, and I was a stay-at-home mom full time up until this last year. Justin provides our family with our primary income until I start my first year of teaching when all of our kids start school next year (daycare is expensive for 3 toddlers). We did not foresee Jayse’s relapse and we were not expecting to need this surgery for another year at least. At this time, we are worried that we will not be able to keep up with expenses at home while also dealing with the expenses of pursuing this procedure for Jayse. The funds that we raise will help with medical expenses, medical equipment, lodging, and transportation. While we will go back and forth between the treatment site in Florida, there is a total of 8 weeks of casting involved in this process. (For details about this process please keep reading Jayse’s story.)

Jayse has been seeing Dr. Dobbs since he was around 4 months old and Dr. Dobbs was still in St. Louis, MO. Many have asked us since Dr. Dobbs moved to West Palm Beach, why we don’t choose a doctor that is local to us to continue his treatments. The simple answer is, Dr. Dobbs is the best and we want Jayse to grow up without pain while doing as few procedures as possible. Up to this point, Jayse has already undergone 2 tenotomies and worn 15 sets of casts. If you are interested in hearing more about Jayse’s experiences with clubbed feet, please keep reading Jayse’s story.

We hope that you will consider making a donation and that you will check back in as we update this page after each of his appointment.

More About Jayse’s Story:

While common, there is still a lot of unknown about clubbed feet and little helpful information about the treatment process to help expectant parents with research online. For those who aren’t familiar with it, Clubfoot is a congenital foot deformity that can affects bones, muscles, tendons and blood vessels in the feet. A child with club foot has one or both feet turning inward and up towards the body at birth. When I was pregnant with our twins, we found out at our first anatomy scan that one of our boys was diagnosed with bilateral talipes equinovarus, otherwise known as clubbed feet. After the scan, they took me into a room to explain it to me and set us up with specialists at CMH that would help us once our twins were born. Justin and I went to the initial appointment with Children’s Mercy close to our due date and they explained to us the general process of what we could expect. Casting about 4 weeks after he was born, once a week for 4 to 6 weeks, then a tenotomy (procedure where they cut the tendon to help with the tension and growth) and more casts before he would wear foot braces known as boots and bar while sleeping until he was around 4 years old. Straightforward and easy, right?

Unfortunately, it wasn’t as simple as it sounds. We quickly learned that severity isn’t determined by the appearance of the child’s feet, but rather by what we can’t see. That includes how tight/short their tendon is as well as several other factors out of our control, like growth spurts.

We followed the process and made our first appointment with CMH after Jayse was born. Our first set of casts was put on, but a day later they had slipped down off his legs and we had to rush in to get them replaced. We had repeated instances where the casts weren’t properly fit onto his legs and we needed additional appointments to fix the issue. After 4 sets of casts that successfully stayed on his legs, there was very little change in his feet and we were beginning to feel discouraged. By this time, we were following the journeys of other clubbed foot families on Facebook and we knew that this just didn’t feel right anymore. While speaking to the specialist at CMH during his next appointment, she recommended that we do a 5th set of casts and then do a tenotomy then another round of casting. Red flags flew up everywhere! This wasn’t normal. Jayse got his new set of casts and we went home to look further into this.

That night, we couldn’t see Jayse’s toes. A sure sign that the casts had slipped again and were no longer safe to wear. We began taking them off and made posts on the Facebook pages for the first time. We wanted to know why this kept happening and if this Dr’s recommendations were normal. They were not! We were urged to seek a second opinion because it was clear to parents who had experienced the same issues, that these doctors were not able to properly treat him.

This is when we were introduced to Dr. Dobbs. He is the best physician for treating clubbed feet in the country. I reached out to him and we were on his schedule right away. In 2019, he was seeing children at St. Louis Children’s Hospital, a 4-hour drive from our home. Jayse and I made the trip and completed 4 weekly casts with Dr. Dobbs and then the 5th set of casts followed the tenotomy for two weeks after he was fully corrected. Finally, he was ready for maintenance and his first set of boots and bars. Maintenance involves wearing the boots and bars 23 hours a day for the first three months then during naps and nighttime for 3 to 4 years. We also stretch their feet 4 times a day. We also continued to do follow-ups in St. Louis to ensure that we were staying ahead of any relapse.

Over the summer of 2020, Dr. Dobbs moved to the Paley Institute in West Palm Beach, Florida. We were worried there wouldn’t be a way for us to continue our care with Dr. Dobbs. At that time, Jayse’s next appointment would be around his 2nd birthday in April 2021. At that appointment, Dr. Dobbs noticed that Jayse’s tendons were re-tightening and recommended that we move forward with another round of casts and a tenotomy. We started immediately at that appointment. This required four additional trips to West Palm Beach, rushing to gather documents and supplies and booking flights and lodging etc., while also juggling and scrambling to work out the financial aspects of this process. We went through three more sets of pre-op casts, surgery, four weeks of non-weight bearing casts. Afterwards, we followed up with AFO braces during the day, physical therapy, stretching, and a new set of boots and bar that are meant for bigger toddlers after surgery. During this process, Dr. Dobbs let us know that while this would help him now, there was a good chance that Jayse would require a tendon lengthening surgery closer to age 5. After this procedure was complete, he was fully corrected and he was so much happier.

Over the last two years, Jayse has grown tremendously and has become very active. He loves riding his bike, running through the yard, swimming and jumping on our trampoline. You would never know that his feet were any different than his brother’s when he was born. About a month ago, he began to complain that his feet hurt after playing hard outside. Now, when he was walking or running, his dad and I could see that his feet were beginning to pull in again. We immediately contacted Dr. Dobbs assistant and made a virtual appointment so that we could start a plan.

During our tele-med appointment, Dr. Dobbs recommended that we move forward, now, with the anterior tibialis tendon transfer (ATTT) surgery. While we knew that it was a possibility in the future, we were not expecting to move forward with it for at least another year. As I write this, we are preparing to travel to West Palm Beach, Florida on July 3rd for his first casting appointment. Our schedule is pre-op casts on July 3rd and 17th, ATTT surgery on July 20th which includes putting on non-weight bearing casts that he will wear for four weeks, a cast change on August 18th where he will be placed in below-the-knee walking casts, and a final appointment to remove the walking casts and surgical buttons on September 1st. We will follow this again with AFO’s, boots and bar, and physical therapy three times a week for 6 to 12 weeks.

Again, I want to thank you for considering making a donation to help Jayse get back to Dr. Dobbs. As you can see, our decision to continue care for him is about making sure that he gets the best treatment possible while he’s young so that he can continue to grow without pain or feeling as if he can’t keep up with other children his age. If you’ve read our story and feel compelled to do so, please share with others you know. Every bit will help us to provide care, travel, and ensure that he has what he needs while he’s healing. Please check back for updates after his appointments and we will continue to share Jayse’s story.