Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy

The best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people I have met. The ones that, even on their darkest days, strive to make a difference through their stories.

I recently had the opportunity to spend time with a childhood friend. We hadn't seen each other in years. We followed each other on social media, and that was about it. Shortly after her son was born, we started running into each other at the outpatient facility where our boys received therapies.

Before we knew it, we were supporting each other through the challenges our boys faced. We encouraged each other to keep pushing. We watched them achieve milestones we were told they would never reach.

Meet Sam Mortimer

Sam Mortimer is an amazing mom and advocate. She lives in Deptford, New Jersey, with her husband and 3 children. Her youngest child, Hudson, was diagnosed with cerebral palsy at the age of 18 months.

Although Sam and her husband have been able to implement a treatment plan through the diagnosis, they are still searching for their son's accurate diagnosis – a story I can uncomfortably relate to.

Hudson’s story

This section is Hudson's story, written by his mother, Sam.

Hudson was born just before 38 weeks in 2021 via induction due to me having gestational hypertension. He passed every newborn screen. He went home to be guarded by his 2 older sisters who were so excited to have a little brother. After 4 months, I noticed he was unable to hold his head up but we were dismissed by the pediatrician, who said he was still young. I returned at 6 months, and we started the process for early intervention: physical therapy, occupational therapy, and developmental intervention.

At 10 months, he had an electroencephalogram (EEG) that showed pre-seizure activity. By 11 months, he was prescribed daily seizure medication. Within the first few days of being on this medication, he had a seizure that resulted in us getting a CT scan and a continuous EEG.

Shortly after these tests, we were sent for an MRI showing that he had thinning of the corpus callosum. He was officially taken off the previous daily medication and prescribed a new one. At age 1, he was sitting independently. We were all so proud of him.

A month later, a long seizure that required transportation via ambulance and multiple doses of emergency medication scared us all. But we did our best to remain positive. Genetic testing came back normal as our list of diagnoses continued to get longer.

Hudson was now diagnosed with cortical vision impairment, hypotonic cerebral palsy, and oral dysphasia.

2023 was a year of growth. We were now doing outpatient therapies on top of early intervention, using ankle-foot orthoses and a gait trainer. Hudson's EEGs now show that his seizures have moved from generalized to focal with the significance unknown.

Although we still have our challenges and are now fed through a G-tube, we get to celebrate the little things that are actually big things. After the G-tube surgery, Hudson moved to the 50th percentile and looks so much healthier. We continue to celebrate every milestone he achieves and hope our story can help someone else in the community."

Sharing experiences helps other parents in the rare disease community

As the mother of a rare disease child, I recognize the importance of sharing stories. I don't think there's anything more valuable than listening to family words. We parents are often ignored because we aren't professionals, but we are the experts for our children.

After spending time with Hudson, I felt these questions and answers could help other members of the rare disease community. Sam agreed.

What range of emotions did you feel during the process of getting the hypotonic cerebral palsy diagnosis?

When Hudson received his hypotonic cerebral palsy diagnosis, I was relieved. I knew that through this diagnosis, we would have access to therapies and medical equipment that the original hypotonia diagnosis would not have given.

How did you get through days of uncertainty?

When we are bouncing from therapy to specialist appointments, I take everything day by day – hour by hour. I always wonder if this will be our life forever, but I do my best to not focus on the future too much. It's hard to force yourself to stay in the moment but I think I do a good job at it. We try to take what Hudson is fixated on and have that take the lead on what we are working on in therapy. He may not be the typical 2-year-old, but he is still learning new things every day because we meet him where he is and work from there.

What has been most impactful through your family's journey?

I think the most impactful thing for our family is seeing the amount of people who support Hudson through his diagnosis. There was a time when I had no idea if he would be able to interact with the world around him, and now, he is interacting in his own way. He has no idea he is different, and that makes me so happy. I love watching his personality change and develop as he grows.

How do you feel you have changed since becoming the parent to a rare disease child?

I don't think I have changed too much since having Hudson. Our middle child is autistic; therefore, we have learned not to sweat the small stuff. We are used to having to adapt. The biggest change with Hudson is learning how to navigate the time he has to spend in the hospital, whether sick or getting tests/procedures. I have always remained calm in stressful situations, which has helped having 2 special needs children. We have been very fortunate to have great nurses caring for Hudson, which has inspired me to consider going back to school to become a nurse.

What advice would you give to another parent in your shoes?

Allow yourself the time you need to grieve the life you imagined when you got pregnant. But don't let the denial fill your life and interfere with the care your child could be getting. Take suggestions from those around you. Order the equipment, even if it's temporary.

Find your support and space with people who understand so that you can have a space to cry and be angry. None of us want to see our kids need the things they do, but it's not about us anymore; it's about how we can best support our children.