What is Jordan’s Syndrome?

What is Jordan’s Syndrome? This was the exact question that I asked myself when it was first introduced to me. When I inform someone about her syndrome, there is so much information to share. I, too, am learning about it every single day!

Here are some of the typical characteristics that you may find that accompany this rare syndrome.

The reality is, those are not the first characteristics people always see or think about when they look at a child with disabilities. Those qualities exist in every human being and should always be considered.

Here are some struggles/difficulties that children with Jordan’s Syndrome may face in their lifetime.

Hailey’s Biggest Challenges

One of Hailey’s biggest challenges is her low tone/Hypotonia. Hailey receives services while at daycare. She has physical therapy three times a week while at daycare, occupational two times a week, and speech/feeding two times a week as well. She also has early intervention physical therapy on Saturday mornings at our home.

Hailey had a difficult birth story. She was a planned Cesarean section, but she decided to come an entire month early (smart kid, it was before everything shut down for Covid). She was breech, so it was a difficult extraction. The doctors struggled getting her out, and there were definitely my own moments of panic while in the delivery room. Because of her low tone, it made it that much more complicated for the doctors. Hailey was lucky, and only had a 6 day stay in the NICU and did not require a feeding tube or oxygen.

Feeding Time Difficulties

Hailey struggles with eating. She has a tendency to vomit during feedings if it is too fast or is too much. She is under the care of a gastroenterologist who will be performing a Barium Swallow test to make sure everything is in check. Hopefully, we can then start introducing more foods to allow her to grow! My baby may be underweight, but she sure can fill out a cute outfit!

Lastly, we lucked out until a few days shy of her first birthday. Hailey experienced Atonic/ Myoclonic seizures and is currently under the care of an amazing neurologist (the doctor who diagnosed her with ppp2r5d) and is being treated with Keppra medication.

Keep following her story and visit Jordan’s Guardian Angels for more information!