Jake Connolly 9th Birthday gives back to the NODCC

We would like to ask you to help Jake support the NODCC in their efforts to raise awareness for Disorders of the Corpus Callosum by making a donation of ANY amount in Jake's honor!

You probably know Jake's story, if you know Jake, or our family. Jake was born on November 26, 2011.  Jake has two brothers (Patrick, 21 & Jesse, 11) and a sister (Marcey, 7).  

As a baby, Jake was pretty happy, but he wasn't meeting developmental milestones on target. This was from holding his head up late, to rolling, to sitting, crawling, standing, & walking. At about 10 months of age, after seeing his pediatric neurologist for a few months of wait & see, a MRI of the brain was ordered. The MRI was also suggested by his ophthalmologist who he was seeing for amblyopia (lazy eye). Jake had to undergo general anesthesia, but we got some answers. Jake has hypoplasia (thinning) of the corpus callosum. Repeat MRI at age 4 was stable!

Jake has also received an Autism Spectrum Disorder (ASD) diagnosis because of his sensory dysregulation, poor eye contact, and lack of speech/expression needs & wants. 

Jake had another EEG October 2015 to make sure he wasn't having any seizure activity.  It did not show any seizures but did show an abnormal increase in activity in the right front part of the brain. That puts him at more risk for seizures and risk for problems with development.  He was started on a medication to help suppress this activity which will prevent seizures and hopefully encourage his development. He has showed a lot of gains since then.  Jake is more engaged in activities and seems more aware of his surroundings.  Jake also has been using more gestures and expressing his likes and dislikes.  His last EEGs in June 2017, July 2018, and Sept 2019 did not show this activity any more! Yay!

Jake is now walking and speed walking, but with an unbalanced gait. He still wears AFO orthotics in his shoes due to pronation of his feet.  We are hoping that he will continue to gain stability with these.  

Jake loves going to the park, especially to go on the swing. He is also exploring the play structures more now too!  Jake LOVES riding his adaptive tricycle! Jake’s favorite sensory regulation at home is playing with his tablet, "reading" books, and swinging on his platform swing!

Jake is still not speaking and has a Assistive Technology device that we are all working with him to use functionally in addition to Picture Exchange (PECS). Jake goes to an early childhood program at a local public special education school.  He goes to school from 9am-3pm Monday through Friday.  Jake is currently receiving Physical therapy, Occupational therapy, Speech therapy, & social work services at school.  

During pre-COVID times, Jake receives about 15 hours of Applied Behavior Analysis (ABA) therapy home per week.  He receives speech therapy twice a week at home and just started home OT.   Jake is doing hippotherapy (equine assisted therapy) with a physical therapist weekly.  He make great progress all the time! Jake also goes to a 1:1 swimming class once a week with our local special recreation association during the fall & spring sessions. Jake is the busiest 8 year old I know!

We still don't know exactly what the future holds for Jake, but we do know that he continues to be happy & always makes progress! He lights up our lives!

Jake's parents went to our first NODCC conference in Boston in July of 2014. It was great learning more from researchers, professionals, and other people just like us. It was awesome just networking with other great families!

Jake & his immediate family all went to the NODCC conference Summer 2016 right here in Chicago!  The kids loved the camp and we met a lot of forever friends!  It was great taking part in the informative & networking sessions.  Our family also enjoyed the 2018 conference in Southern California! We already cannot wait for Texas in 2021! 

About NODCC http://nodcc.org/about/ or www.nodcc.org http://nodcc.org/corpus-callosum-disorders/faq/ for more info on disorders of the corpus callosum

Research http://nodcc.org/research/research-programs/

Amy's guest blog on CC disorders from a parent's perspective http://nspt4kids.com/guest-blog/what-are-disorders-of-the-corpus-callosum/

Youtube video on DCCs  https://www.youtube.com/channel/UC6jJ-48zNsUnBsgN8E7BPMg 

The National Organization for Disorders of the Corpus Callosum (NODCC) is the leading nonprofit organization dedicated to educating, enhancing lives & promoting understanding of these disorders. There have been significant strides in understanding & making life productive for those living with & caring for an individual with a disorder of the corpus callosum, but we need much more research to uncover more treatment and strategy options for improving lives & uncovering causes of the conditions. The NODCC collects and present expert multi-disciplinary & accessible resources for all those dealing with callosal disorders. 

https://www.facebook.com/NODCC