Category Archives: Agenesis of corpus callosum (ACC)

Recent posting by the mother of Jayna

The most recent posting by the mother of Jayna, who suffers from Complete Agenesis of the Corpus Collosum.

Katherine writes:

“We started off on Saturday loading up the family and heading down to Waco to meet with our trainer Jackie and her boyfriend, Dominic and their Service Dogs, Ellie & Diesel at Toys R Us. We met outside to chat and let the dogs get re-acquainted with each other, and then headed inside for a busy store with lots of kids and families.

We began in the front of the store refreshing Jayna & Brian’s lesson of intersection; etiquette of coming to the intersection, stopping, looking both ways, and then continuing down the aisle. Both did fabulous and did exactly what they were supposed to do! Jayna’s SDIT Brian was very comfortable with Diesel and Dominic and Ellie, and decided to go to another part of the store since Ellie and Brian have some tension between the two of them. Their training together came later.

We walked around the store, found loud and interactive toys; the first toy was a walking Dinosaur and Brian did NOT like that ONE BIT. As we went back and forth and played the toy again and again, he became much more tolerant of the toy and began to ignore it. He continually looked up at Jayna and we had to continually remind her to make eye contact with him throughout the training and walking. We played with a ball bouncing which was a huge distraction, but again, Brian quickly became tolerant of it. Next was a 6″ car that we rolled in their direction. Brian went into a “cover” position around Jayna no matter what side we rolled it on, and he soon became tolerant of that as well.

Then came the training of walking Ellie in front of him. They both got rather vocal, so that will be something that we continually work on. At one point, a father carrying a baby carrier ran past us and Brian began barking. We asked the father to come back by and see if the carrier or just the father was a trigger, and Brian didn’t budge… so we just assumed it was that he was in a rush and ran “out of nowhere”, which startled Brian. We also decided that with Halloween coming, it would be a good idea for us to train with masks. When our other daughter Jillian walked up with a Ninja Turtle mask on, Brian immediately went into a front cover with Jayna and growled. Jayna was on the floor with him, and he was ON her to protect her applying deep pressure. Then came my husband, Dave, with the same mask – but he walked up out of nowhere and came in quickly, which then set Brian off and he was, again, in front cover of Jayna. Perfect job, Brian! Afterwards, we allowed him to sniff the mask, but he still wasn’t sure of it when we put it on our faces. We have a video of that.

Then there came the man with green hair and his child. Brian was cautious of him, but we told the man that we were training a Service Dog and wanted to know if he would come up to Brian and Jayna and introduce himself and properly introduce himself to Brian (show back of hand to be smelled, then licked). Brian loved that guy! LOL! Figures…he likes men with green hair! One thing we noticed was that Brian is startled and alarmed with men in general. That will be something that we have to work on. Dave and I plan on inviting men over to introduce to Brian and allow him to build up that tolerance. Brian knows when something is “wrong”…so we don’t want to take that effectiveness away, but big men, tall men, or men with hats alarms him. Go figure.

Now to Sunday…

Brian did great in the youth group! He was comfortable with everyone who came in, and loud noises too (kids playing ping pong and yelling, etc.) When we went to the Sanctuary for worship, Brian was vocal again when people clapped. No one seemed to mind (in fact, they all gave a “thumbs up” when we looked at them). At the end of the service, there was a LOT of clapping and Brian became VERY vocal and barked quite a bit. When we tried to leave, we were urged to stay and were told (by no less than 5 people) to please not leave…that he was just fine and they approved of him being there and barking. It was at that point that our youth pastor got up and called our family forward to explain about Brian and why we have him and why he was coming to church now. So we did. When they clapped us out, Brian barked and barked…everyone laughed and had a great time. Of course, we realize that we will have to work on stopping Brian from barking, as that is not allowed in excess for a Service Dog.

We’ll try to see how we can keep the barking at bay – perhaps using the Pet Corrector or a spray bottle. Saying, “Good Boy” and constantly comforting him with praise when the clapping began kept him quiet for a good while, but at the end, it was just too much for him.


So we had an evening Bible Study tonight with the youth, and when a young boy came in a little late, Brian could sense his fear and he was uncomfortable. We told the young man that we were sorry, but we would definitely work with he and the dog later and see if there was a way we could get that behavior to stop. At the end of Bible Study, we went out into the open area, out of the classroom, and invited the young man to come out with us to formally introduce Brian and to work with him on not being afraid, and for Brian to get familiar with him and not bark. When the young man walked in with Dave, Brian began wagging his tail the whole time but then began barking. So, after settling Brian down, we told the young man to extend his hand out with the back of the hand facing outward and to gently approach Brian saying “good boy” and being calm. Brian then walked up to him, licked his hand, wagged his tail and was fine! We then asked the young man to sit on the floor with Dave and to, again, extend his hand out. Brian did great there too. (All this is happening after I sent a text to our trainer, Jackie, asking how we were to help this situation…we had NOT heard from her until we got home…so this was all Dave and I acting on instinct). Once the young man got on the floor, Brian began licking him and was quite happy. We then took off Brian’s vest to “play” for a minute and several other youth joined us. We had a GREAT time of playing and loving on Brian…the young man included. We asked the young man if he would like to give Brian a treat and he did beautifully! We told him that the next time he sees Brian, to be confident that we are in control, and to approach with his hand extended backwards again for a “reaquaintance” and then we’ll allow the young man to treat him for his good behavior.

When we got home, I texted the situation to our trainer and she was SO reassuring to us! What would we do without her?! She is AMAZING! I asked her if we did ok and what she would have done differently in that situation and her response was amazing….

From Jackie:
No that’s perfect!! I wasn’t sure if the young man would have been comfortable interacting with Brian. This was terrific for a few reasons. The young man’s fear probably plays out in his body posture, which actually probably sets off other dogs in other settings which then adds to the fear. By doing what you did, this young man is more likely to have different body posture. Also, Brian in some ways did good because he probably picked up on posture/movements out of the ordinary. For instance: when we were at the mall and the people were just kind of standing and watching, or when your husband’s approach too quickly with the costume yesterday and when that man ran by yesterday… You all taking the time to redirect Brian lets him know that not everything is a threat and there are more appropriate ways to respond. IF he continues to have problems with the young man now that the initial barrier has been broken, we could actually use that as an opportunity to redirect him much like we did yesterday with the costume. It’s awesome how you guys handled the situation! And the fact that you noticed the situation is good too because that will help with narrowing in during the future for any troubles he might have. It will also help for Brian recognizing his own triggers.”

I should also mention that YOUR donations are truly making a difference!! Without your support, NONE OF THIS would be possible. Training is hard. It’s hard on the dog, but equally hard on the handler (Jayna). Spending as much time with Jackie as possible is so beneficial, and we try to get as much time in with her as possible when we meet with her…she lives in Temple…we live in Arlington… 2 hours away.

So thank you. Thank you from the bottoms of our hearts. Thank you to Tate Springs Baptist Church, our church home, for loving us and supporting us in this transition. Thank you for allowing Brian to “praise” when we praise. Thank you to ‪#‎tatezone‬ youth group for enveloping our family into your group and for treating our Jayna as just “one of the kids”. It truly means the world to us. She finally has friends…and that is priceless!

In Him,

Lovely post from the mother of Jayna

A lovely post from the mother of Jayna, was born with a very rare medical condition called Agenesis of the Corpus Callosum, and her SDIT, “Brian”

“A successful end of the first day of school for Brian! The School Administrator wrote, “All is good. Brian is doing well. Jayna seems a bit distracted….but that will get better every day. The kids here have had Service Dogs before at school. They know they are not allowed to touch or talk to while he is “working” during school. That probably helps keep him calm, too. Brian knows what he is doing….smart dog. Jayna just needs more work with commands and how to give treats at right time. The thing to find out…….we have told kids while he has vest on…he is working which means no petting. Did the trainer say that when no vest on he knows that means playtime? Jayna is trying to play and tells kids to play with him….just don’t want to confuse this with what the trainer taught him. Just let me know so we are all on the same page.” She then wrote, “He will be a great fit here.” This was a beautiful report and we are so thrilled!! God is showing His grace and favor and we are so honored that He saw fit to bless our daughter NOW in her life! What a blessing!!

In turn, I immediately texted our trainer, Jackie, and she was so thrilled. She and I both think Brian is a natural at being a Service dog. A few tweeks to be made, but they are both well on their way to a great educational experience together!

Thank you for all of your support. We are planning on a training session at Toys-R-Us this weekend…and I can already hear the “Mama, I want…”

In His Love,

Jayna Curlee and her Service Dog in Training, Brian | Kids & Family – YouCaring

The Story of Jayna & Brian

Our daughter, Jayna Suzanne, was born with a very rare medical condition called Agenesis of the Corpus Callosum.  Agenesis of Corpus Callosum (AgCC) is a rare disorder that is present at birth (congenital). It is characterized by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres (taken from  In Jayna’s case, she has a “complete agenesis” which means that the Corpus Callosum (AgCC) is completely absent or not there.  This condition is said to happen in 1:4000 of the population (taken from Caltech University, April 2007).  Persons with agenesis of the corpus callosum may have neurological problems, such as seizures (60%), intellectual impairment (70%), and psychosis (taken from National Center for Biotechnology Information, 2010).  Our Jayna does suffer from seizures and intellectual impairment although her seizures are in remission as of date and we’re praying she doesn’t have any more, however, that could change at any point. AgCC is not an illness or disease.  It is a deformity where the brain did not form while in the 12th – 22nd week of gestation.

See More at: Jayna Curlee and her Service Dog in Training, Brian | Kids & Family – YouCaring

The Jayna Experience

This posting is absolutely going to melt your heart. Get your tissues out! It is a very long posting, but that is because the client has a very rare and interesting disorder that I believe needs more attention from the community at large and how a Service Dog can help. It’s also about two beautiful families that came together and through their unbelievable compassion, are making dreams come true.

Dear, beautiful, sweet, and intelligent 12 year-old Jayna was born with a very rare condition. She has Complete Agenesis of the Corpus Callosum and Intellectual Disability. She is currently undergoing Chromosomal Genetic Testing under the care of Dr. Ariel Braumbar of Cook Children’s Hospital in Fort Worth. Jayna also has issues of wandering, Anxiety Disorder (severe panic attacks) for which she is under medication for this. Her family drove all the way down from Dallas to meet Brian.

Agenesis of corpus callosum (ACC) is a rare disorder that is present at birth (congenital). It is characterized by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres. This part of the brain is normally composed of transverse fibers. The cause of agenesis of corpus callosum is usually not known, but it can be inherited as either an autosomal recessive trait or an X-linked dominant trait. It can also be caused by an infection or injury during the twelfth to the twenty-second week of pregnancy (intrauterine) leading to developmental disturbance of the fetal brain. In essence, the brain is completely divided into “two” brains.

In some cases mental retardation may result, but intelligence may be only mildly impaired and subtle psychosocial symptoms may be present. ACC is frequently diagnosed during the first two years of life. An epileptic seizure can be the first symptom indicating that a child should be tested for a brain dysfunction. The disorder can also be without apparent symptoms in the mildest cases for many years, but with Jayna, she started having febrile grand mal seizures at the age of 1. Then, they became absence seizures. The family was quick to find out what was happening, and took her to Cook Children’s Hospital in Ft. Worth. That is when they found out she had complete agenesis of the corpus callosum. Until the age of 9, she continued to have less frequent absence seizures and then they stopped.
Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Recessive genetic disorders occur when an individual inherits the same abnormal gene for the same trait from each parent. If an individual receives one normal gene and one gene for the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% with each pregnancy. The risk to have a child who is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females. Jayna’s amazing, absolutely supportive and beautiful parents show no symptoms. Jayna also has a younger sister that is absolutely normal. It has been thought to be a very rare condition but the increased use of neuro-imaging techniques, such as MRI, is resulting in an increased rate of diagnosis. This condition may also be identified during pregnancy through an ultrasound. Currently, the highest estimate of incidence is 7 in 1000 individuals.

Now, Jayna experiences extreme panic attacks that seem to come out of nowhere – there are no identifiable triggers. When I first met her, and during the many hours we spent as her beloved family drove down from Dallas to adopt “Brian” from our Available Assessed List, she spoke, acted, and interacted completely normally. Jayna is gentle, loving, immediately bonded with “Brian”, and it was beautiful to see how much her younger sister, 10 year-old Jillian, was so protective of Jayna.

Jayna’s incredible parents are still undergoing tests with Jayna, as mentioned above, which include MRIs, many visits to Cook Children’s Hospital in Fort Worth, and investigating all kinds of ways to try and understand this rare condition and how genetics are involved. Jayna shows some autistic traits, but she is not diagnosed with autism. Many scientists doing research on this rare disorder think that many children who are “diagnosed” with autism may actually have this rare disorder, which is a fascinating area of research that needs much more funding given the drastic rise of autism diagnoses in the past few years.

Jayna is socially extremely easy to converse with and engages easily, from what I observed. She does have all the special “equipment” that many autistic children have, such as many weighted blankets when she starts to panic, but our hope is that SDIT “Brian” will become her blanket!! After just one day together, the parents informed me that Brian follows Jayna around everywhere. Brian knows that something is different. That’s why I felt they would be the perfect match – Brian is just that smart and instinctive. I showed the family and Jayna how to make eye contact with Brian, which he does very well, how to command him to “sit”, “down”, and if he gets too excited, how to do the step-down technique to help him settle. He would roll over on his back and let Jayna and her sister just pet and rub and lie all over him!! I gave them a special collar to help Brian “heel” for Jayna – I explained it would take a little bit of time for Brian to get used to it, but after walking around with Brian on the collar, he started to heel perfectly. Jayna has a soft voice, so she was encouraged to give commands with a more assertive voice. This definitely made a difference!

The family also brought along their other dog, a brilliant Aussie/Chihuahua mix! Seriously – this tiny dog is so incredibly smart! Brian and their dog took a little bit of time to get used to each other – there was absolutely no aggression (Brian wouldn’t hurt a flea) – but once the sniffing was done, all was fine. We talked about redirecting Brian to Jayna as much as possible, and her sister understood the reason for that. The only time I could notice the disorder that Jayna has was when I asked her a question: I said, “Jayna – when you have panic attacks, what are some of the first symptoms that you feel”. It was very interesting – because she was looking at me, and I could tell she was processing the question, but her father pointed out that this is the way a “split” brain works – it takes a few minutes for the two sides to process the information and come up with an answer. Indeed, in about 2 minutes, Jayna immediately started answering my question with complete clarity. She said that her heart beats faster, she gets very hot, she feels restless and nervous, etc. I let her know that Brian’s job will be to be so bonded with her that when these symptoms start, he will “alert” to them, and she is to completely focus on Brian to help soothe her before the attack becomes too large. I am confident Brian will be able to do this. She also said that she has nightmares, so Brian will sleep on the bed with her and hopefully gently wake or comfort her during or after a nightmare.

There is another beautiful side to this story. Words cannot even explain what beauty develops when there is so much love and compassion certain people.

Brian was donated by our client, Paul, and his wife Shanika. Paul and I have been working together and become wonderful friends over the past two years. Paul is a Wounded Warrior and has suffered several TBI’s, has severe PTSD, and has had multiple surgeries on his back. His frustration with not being able to work due to his disabilities left him very sad and feeling purposeless. His equally beautiful inside and out wife, Shanika, just celebrated her 19th year in active duty. Paul was at home all day alone, until he found Pit/Boxer mix, “Petey”. Training Petey and Paul was so easy and rewarding – Petey picks up on Paul’s sadness, anxiety, anger, everything – and never leaves his side. Petey is a perfectly trained Service Dog, and Paul was a HUGE part of that – studying the manual daily (he has short-term memory problems), practicing, and giving Petey more love than I could ever imagine. Paul often says that if it weren’t for Petey in his life, he doesn’t know if he would be here right now.

Then, Paul and Shanika rescued “Brian” from a friend who was going to have him euthanized because of a problem in his hip. They couldn’t allow this – so they brought Brian into their home, paid for the surgery on his hip, and now, he runs and plays as happily and healthily as any dog – and the veterinarian said he is completely fixed. Overall, they have spent thousands of dollars on both dogs to help with any medical issues – but they realize that these special dogs are God’s creatures and deserve everything we can give them. Shanika even has her own little dog, “Scarlett”, a tiny, beautiful comfort to Shanika. Scarlett tries to play with big Petey and Brian, but she and her little underbite have to be careful not to get squished!

Well, over the past year and after Brian’s surgery, Paul started training Brian like he trained Petey. Brian would mimic a lot of Petey’s perfect Service Dog actions – like immediate “sits”, “downs”, “sit/stays”, “down/stays”, “heeling”, and the command “kennel” – where both dogs immediately went to their big comfy kennels without hesitation – even Scarlett would lie down in the kennels with them! But Paul talked with Shanika, and although they loved Brian as one of their family, Paul felt that it was selfish for them to hang on to such a bright and gentle dog that they knew could be helping someone else. It was a tremendously difficult decision for Paul to make because he had bonded to Brian, but he knew there was that perfect “someone” that Brian could help the way Petey helped him. The way Jayna’s family and Paul came together I can only attribute to divine intervention.

After over four hours together with Jayne’s family and Paul and Petey, it was obvious that this was going to be a perfect fit. Jayna’s mother told me that several people that have children with ACC asked her why she didn’t want a completely trained Service Dog for Jayna. Her reasoning was perfect. She understood that the most important part of the process of training a Service Dog is having that bond develop through constant time together, and training together – making steps forward and also learning from mistakes. I absolutely agree. This training process, I believe, as I do with all client who have brain disorders, strengthens the connectivity between the neurons in the brain of the client. The brain actually changes as a result of training – as I have seen on PET scans of Wounded Warriors with PTSD and TBI after they have trained for six months during a study I had the luck to be part of. I have no doubt that this will be the case with Jayna. So far, Jayna’s mother has said that in the short time (a few days) that they have had Brian, he absolutely will not leave her side. She even shared one beautiful anecdote with me; the family was at church the day after adopting Brian (he’s not ready for Church yet), and Jayna’s mother saw Jayna started to become unfocused during the service. She repeated to Jayna, “Remember Jayna, you have to try to focus”. Well, she heard Jayna in the house later that day walking around with Brian and repeating, “Brian, remember, we BOTH have to try to focus”. It was amazing.

Paul had a difficult time saying goodbye to Brian, as he has difficulty holding in his emotions at times. But Jayna’s father stayed inside with Paul alone as we packed up everything Paul and Shanika donated to Jayna’s family – including the crate, blankets, dog bowls, food, toys, a dog bed – and they talked together about what a ministry Paul was doing by giving so much to help another family. This truly helped Paul, and the family was so understanding of Paul’s mix of sadness, tears, but also joy in knowing he was doing what he needed to do. They will always stay in touch – I know they will be friends forever – and when I called Paul that night to see how he was handling it, he actually sounded more at peace than I have ever heard from him in almost two years. Jayna’s family, in the meantime, is beyond grateful. Jayna may never grow up to be a perfectly “normal” young woman, but with Brian’s help, she will most certainly improve. I can’t wait to follow them. They will be continuing training with Candace, our trainer in Ft. Worth if she is able (she is going through some very difficult medical issues herself) – but I will be more than happy to train with them in Dallas or if they come down here for extended sessions!!

You can even see in these pictures how Jayna, who is usually shy around strangers, especially meeting Paul who is extremely tall with a shoe size of a zillion, warmed up to him enough so they could pose together and he hugged her.

THIS is what happens when two beautiful tiny “villages” come together with nothing but compassion and love to give. It is God’s grace shining his light on our world – which we all need to remember CAN happen.

If you are interested in finding out more about this rare disease – especially if you have a child with autistic traits, please visit: