Jake’s Got This! Jackson, NJ based non-profit helping those like Jake with cerebral palsy
In baseball, when a player returns from the paternity list and hits a home run or has a big day at the plate it is a shared belief that it must be 'Dad Strength' these players have after the birth of a son or daughter.
There is also such a thing as 'Mom Strength' and it doesn't always involve an athlete but our everyday mom's who jump over as many hurdles on the track as it takes to get their child the help and services they need, to make sure they're alright, and nothing will stop them from achieving their mission, they'll do whatever it takes.
There are so many moms out there in our own communities who've shown 'Mom Strength' not only to their son or daughter but to others out there as well through a non-profit or by just sharing their's and their son's or daughter's story.
Shannon Kulesa of Jackson is someone who exemplified all that is 'Mom Strength' over the years to help her son Jake. as he battles cerebral palsy, and now, so many more.
Jake Kulesa, now 9 years old, was born ten weeks early with his twin brother Aiden, and they both then spent their first three months in the NICU.
"When we left the NICU, I got a list of things to look for and they told me to actually look for in my other son saying that there's a good possibility that these things are going to be wrong," Shannon Kulesa told Townsquare Media on 'Shore Time with Vin and Dave' on 94.3 The Point and 105.7 The Hawk on Sunday morning. "When Jake hit about 9/10 months, I started seeing them in Jake and not my other son Aiden, so, I kept going back to the doctor saying something's not right, and he kept saying 'are you sure, do you have the right one?' and I'm like 'yea, I can tell my kids apart."
She continued to pursue answers and care for Jake in learning what was going on.
"He just wasn't reaching the milestones like he should have been, so, we had taken him to a big hospital, met with their neurologists, he had an MRI done at 12 months and we were told he has what's called PVL infant brain damage as a result of some of the complications from the NICU," Kulesa said. "At that point, they told me they didn't want to diagnose any further but to please bring him back when he was between ages 3-5. I'm not good with 3-5 minutes when it comes to waiting for my kids so I wasn't really comfortable with that. I already had early intervention in the house, we had an amazing physical therapist there but legally, early intervention therapists can not tell you what's wrong with your child."
Shannon got the feeling the therapist did know what was wrong and subtly made a peculiar suggestion.
"I'm crying, I'm explaining to her what happened and, randomly, she goes 'does he need equipment?' and I was like 'what are you talking about?' and she goes 'well, he's getting bigger and I'm like 'okay, what kind of equipment, and she said 'I bet he needs a bath chair', and I was like 'okay', she goes 'here's a website you can buy one off of or here's a doctor's office, it's a little local hospital, you can check it out, I'm sure someone can help you there, and she kept bringing it up because she knew I was crazy enough to jump online, start googling, researching this place and it was actually Children's Specialized Hospital in Toms River," Kulesa said. "I called them, got in for an appointment and, it was funny, my husband said 'do you want me to go with you?' and I said 'it's the second opinion and it's this little, tiny hospital in Toms River, what are they going to tell me that the other hospitals couldn't' and he said 'okay', so we went in, they were amazing, they spent close to an hour and a half, they brought two other doctors in beside the doctor that I was meeting with."
So, Shannon and 13-month-old Jake met with the doctor.
"She came in, sat me down, and said 'Jacob has what's known as spastic dysplasia cerebral palsy, and I just sat there looking at her, and she says 'do you need a minute?' and I said 'five or ten, at least," Kulesa said. "So, apparently, she talked to me for quite some time then because then she said to me 'alright, you're going to come back next week' and I said 'okay, what are we doing next week?' and she said 'you heard me say nothing today other than cerebral palsy and I thought, wow, you're really good because I zoned out after you said that."
In flashing back to what she was previously informed and what she knew at that point, Shannon spent some time trying to process what was going on and what to do next.
"During the first appointment, when we were told he has brain damage, we were told that as a result of the brain damage he would never walk, he would never sit up independently and he would probably never talk," Kulesa said. "That was something I wasn't comfortable with just accepting and going 'oh, okay, well that's what they said. The biggest lesson I learned in the NICU was to question everything, question everything, question every doctor, and keep pushing until you get the result or the answer that you want or that you're comfortable with, so, that's exactly what we did."
She continued the search for answers after meeting with doctors to find what could be done to help Jake.
"I started researching the heck out of everything around us, what I could do, what cerebral palsy is, what the stages are, what the processes are -- a lot of people don't realize that it's a spectrum, just like Autism, you can go from very mild CP to extreme -- Jake kind of falls in the middle," Kulesa said.
Then, she got an answer, a key that would change everything.
"Somebody, in my research, had passed along a book to me called 'The Boy Who Could Run, But Not Walk' by a Dr. Karen Pape," Kulesa said.
Shannon then went to try to find a way to get in touch with Dr. Pape and find help for her son Jake.
"After I read her book, it just really made a lot of sense and, basically, the short version of her book was that the medical community feels that if you're an adult, and your brain is injured, we can teach you how to walk again, we can teach you how to talk, we can teach you how to sit. For some reason, in babies, it's not generally accepted that you can train or re-train areas of their brain to do those things and Dr. Pape's thing was, well, if we can do it with an adult, why wouldn't you at least try it with a child, especially because their brains are still developing and they're so malleable and if you get in front of it early, that's the best time to start working with them," Kulesa said. "I had kind of already seen that with just my early intervention therapist. When they started, Jake had no use of his left side at all, by the time the early intervention staff left when he was 3, he had full use of his left arm, and today, unless you're me and you know what you're looking for specifically in him, you'd never know that he had full use of that side."
Shannon ended up finding Dr. Pape but learned that she was up in Canada.
"So, I tell my husband, I found this woman, she's up in Canada, he goes 'that's great, you're not going to Canada' and I was like 'well, we can revisit that subject' and he was like 'oh, God, okay," Kulesa said. "So, I found her, and unfortunately she was done practicing and I was like now what do I do, and she said 'I have a doctor, a physical therapist that I have trained and she runs my old center -- which at the time was Step by Step, now it's called the Key to CP -- she goes, 'unfortunately, it's in Rochester, New York and I went 'unfortunately? that's fantastic, I thought it was in Canada' and she goes 'well, where do you live?' and I said New Jersey, and she goes 'in the United States? How did you find me? So, she reached out to the head of the Key to CP, this woman Pia Stamp, Pia reached out to me and said 'you're really willing, it's like almost 7 hours, you want to come all the way up here?' -- 'yea -- I was ready to go to Canada, so, Rochester was like a weekend vacation."
So, Shannon and her husband made the trip with Jake to Rochester.
"It's like a week-long program that they do, it's three and a half hours every day for five days," Kulesa said. "I got up there, I met with Pia, gave her everything that the doctors said, I told them the diagnoses that he's never going to walk and she looked at me and smiled and said 'can we at least try?' and I said 'hey, I just drove 7 hours, you can try whatever you'd like to do. On the very first afternoon, they had him (Jake) standing independently, and on the second day, he took his very first independent steps at just three years old. That was beyond anything, it was worth the 7-hour drive."
However, it did come and does come at a financial cost.
"This is not covered by insurance, so it's $3,200 a week completely out of pocket," Kulesa said. "My husband was like 'I was good yesterday when he was standing, that was worth the $3,200 itself', to have him take those steps blew both of our minds."
Then, they had to figure out the next steps for Jake after coming home from the week in Rochester.
"I had amazing therapists in place that all jumped on board and were like 'what do we have to do, what can we keep doing with this woman to keep him progressing forward', so, we spent several years with Pia going up there once a year, getting a new update, continuing to move along," Kulesa said. "Jake is now 9 years old, he sits perfectly independently, he can get around walking around my house or around his classroom, for the most part, he is in a posterior walker or wheelchair for long distances."
Jake continues to rehab and works on taking more and more steps each day, month, and year.
"He has PT and OT, he does PT three times a week outpatient, he does PT and OT in school, twice a week OT, three times a week PT, I keep what I call 'Jake's Team' very close, so everybody that has hands on him -- every PT, every OT, every doctor, every Orthotist -- you've got to be able to work together," Kulesa said.
Jake has taken steps towards getting more robust, but a big fall a couple of years back with family and friends led to the next level of care.
"Jake had started collapsing, the more he started walking, the more of a toll it was taking on his body," Kulesa said.
There were some low-dose painkillers that had helped but they made Jake tired and exhausted, so, Shannon was looking for another solution to help with the pain.
"I was talking with a friend of ours, who has his own foundation, who was in the middle of a trial with hyperbaric chambers and he said to me 'I have another chamber, try it, see what happens," Kulesa said. "I called all Jake's doctors and therapists, and everybody said the same thing 'it's not going to do anything, it won't help, and I just kept saying 'but, will it hurt, will it hurt him in any way?' -- 'no' -- 'okay' -- so, I called my friend back and said 'hey, we're going to roll with it, see what happens. He did the chamber for about two weeks and one night we came home, he was in the chamber, fell asleep in there, got out late, and I put him to bed asleep."
Shannon then realized she forgot to give Jake his pain medication that night and then Jake went to school the next day without any pain to report and without the meds so Shannon alerted the school nurse and offered to come to the school if Jake was in pain.
She also wanted to see if the effects of the hyperbaric chamber had alleviated the pain for Jake.
"He never went back on pain meds after that for close to a year, he stayed in the chamber, no pain meds, no spasms, was good to go, was lasting longer in PT, sleeping better," Kulesa said.
Shannon realized that the chamber was working to a level she hadn't anticipated so they kept it going but the one they were using needed to be returned to use for another child.
While the immediate impacts were not showing without the chamber, as time went by Jake was in pain again within a couple of weeks, so, Shannon came to the conclusion that they needed to find a way to get a chamber on a more permanent basis.
In talking with her friend, Shannon found hope.
"He said 'Shannon, we got to get him his own chamber' so I laughed, said, 'it's amazing in theory but I don't have $25,000 for a chamber' so he said 'don't worry about it, we're going to run some fundraisers, we'll figure it out," Kulesa said. "We had it in a month. We were able to get the chamber back in our house, we've had it just shy of a year now."
As Jake continues to get stronger while going through PT and OT and doctors visits, Shannon has also turned towards helping other moms and dads whose children also have CP and in doing so formed the non-profit organization called Jake's Got This. to help afford visits up to Rochester and for hyperbaric chamber treatments.
You can listen to more, the full interview conversation with Shannon Kulesa on 'Shore Time with Vin and Dave' on 94.3ThePoint and 105.7TheHawk, right here.