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: http://www.nodcc.org/dcc-faqs