2018 Just for J 5K North Texas Recipient
Our sweet Hensley was born July 5th 2015, 2 weeks early. She was the most beautiful baby girl we had ever seen! Just perfect! Hensley has problems nursing from the very beginning, so we started taking her our pediatric chiropractor. She had mild torticollis & tightness in her jaw that was making it hard to nurse. She also shook her head back and forth all the time, we now know this is caused from Ocular Motor Aprixia(caused by JS) of the eyes. She was trying to get her eyes to focus. By 3 months I knew she was physically behind so I brought it up to her pediatrician. She agreed so Hensley started physical therapy. By 6 months I knew something more was wrong, her eyes weren't tracking correctly & she was becoming farther behind. Again her pedi agreed, she actually thought Hensley may have a tumor behind her eyes so an emergency MRI was ordered. Having your baby put to sleep while still fighting was gut wrenching to watch.
We barely made it home before our pediatrician called with the results. She asked if I was sitting down then told me that my baby had Joubert syndrome. She said she was so sorry & that it was very rare so we could google for information about it. We were in shock, scared and so very heartbroken. With out our faith & trust in God we wouldn't have made it this far! We found a wonderful Facebook group of parents of children with Joubert Syndrome. That group of people have become our friends, our JS family! We met many of them at the bi annual family conference last year. Hensley then continued her weekly chiropractor visits, PT and we added in OT, craniosacral therapy.
Having a child with a rare syndrome is difficult because many doctors don't know about JS, it's up to parents to research. Right now we only have about 1200 people diagnosed with Joubert Syndrome in the world.
Hensley also has obstructive sleep apnea that we believe is caused by her low muscle tone so right now we just monitor her. She will have repeat sleep studies yearly. Hensley is very happy most of the time. She loves playing with her brothers, her cat & her baby dolls! She is a light wherever she goes. We have loved seeing her personality develop. Hensley does private PT 2 times a week, OT 2 times a week, a chiropractor visit weekly, a craniosacral therapy monthly. Has also sees a vision teacher a few times a month & her Eci coordinator monthly. She is a very hard little worker!
We are teaching her to do things that babies/toddlers normally do on their own, but she also surprises us & does many things on her own!! As a matter of fact, she graduated from speech therapy last year and has overcome a sensory aversion to water! This is neurological because the cerebellum controls muscles and movement. Hensley used adaptive equipment while she was learning to crawl and again now while learning to walk. This is to help teach her brain and body the movements while supporting the low muscle tone. Like any Syndrome it can range from mild to very severe.
Joubert Syndrome can also severely affect the kidneys, renal, bladder, liver. Hensley has yearly blood work & sonograms to monitor her organs. JS can also give children severe sensory aversions, which Hensley is working hard to overcome.
Learn more about Joubert Syndrome at http://jsrdf.org.
We are super proud of how far she has come, she is a little fighter! We are in awe of how hard she works every day! Her brothers are some of her biggest cheerleaders & helpers! We just see her as a happy little 2 year old who loves to play & get into everything(finally). We are very thankful for the mobility she has right now! Hensley has taught us to celebrate every progress & milestone, no matter how small it seems!
We are also very thankful that Hensley was diagnosed early and that we live where so many resources are available to us. We know that Hensley will touch many lives that she wouldn't have otherwise came into contact with if it weren't for Joubert Syndrome.