Birthday Week - Kathryn

Posted: May 3, 2023

Happy birthday Kathryn!

In Virginia, Kathryn celebrated her 8th birthday and is Casey Cares' 205th birthday this year!

Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program - we send over 1,000 a year. This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.

Two Trips to the Circus

Kathryn joined Casey Cares in 2020 after being diagnosed with MPS Type I, which is also called Hurler’s Syndrome.

Thanks to Casey Cares, Kathryn and her family has enjoyed Movie & Pizza Night packages, watch a Washington Capitals game, gone to Beyond King Tut: The Immersive Experience, and attended the Bull Run Festival of Lights. To this day, Kathryn's favorite activity has been attending Universoul Circus not once, but twice.

Her mother, Laura, states, “The first year, Kathryn had never been to a circus and had always wanted to go to one. She and I went together as a “girls date” and had the best time.  She couldn’t stop talking about it for weeks."

She continues, “This past year, we had a second child, so Kathryn was able to share the circus with her baby brother as well and had so much fun showing him the animals and the motorcycles.”

Laura loves how Casey Cares, “allows us time as a family to just have fun and not think about medical treatments or upcoming appointments. Some experiences we may have missed out on had in not been for the generosity of donors providing tickets to some amazing events. 

“It’s so great to see Kathryn just be a normal kid and run around the National Aquarium or the Baltimore Zoo. We are also so lucky that there always seems to be an opportunity for fun that comes about right before Kathryn has something “scary” medical coming up,” Laura states.

She expresses that, “[Kathryn] recently got to go to Jurassic Quest and it happened to fall just a few days before her long-term follow-up which involved lots of blood work - 15 vials of blood, MRIs, X-Rays, pulmonary testing, heart echos, and lots of other appointments. Just being able to play at a fun event gave her something else to focus on and throughout all her appointments she was able to tell her doctors about the cool dinosaur she rode on...and jumping on all the bounce houses. I think having that to talk to them about made her feel braver.”

A Rare Syndrome + Numerous Tests

Kathryn's path to her Hurler’s Syndrome diagnosis was lengthy.

“Kathryn was born with hip dysplasia and a few minor respiratory issues. These were not really concerning at the time since they were all very common. When she started falling behind on some milestones, we started looking for some answers, but every specialist we saw assured us that everything was fine because Hurler's syndrome is so rare, 1 out of 100,000 births, that no one thought to test for it.” 

Her mother adds, “After many months wearing a Pavlik harness to correct her hip dysplasia, her hips reverted and her orthopedist recommended surgery. During surgery there were some respiratory complications, but everything turned out ok."

"Afterward, he recommended that due to the number of small issues she was having that we see a geneticist. We saw a geneticist at Children’s National Hospital when Kathryn was 18 months old, but really we were not concerned as had been assured by many specialists that nothing was wrong.” 

Laura continues, “However, as I found out later, as soon as we walked into the room, the geneticist knew that Kathryn had a lysosomal storage order due to the fact that most children with MPS have similar facial features. She recommended immediate genetic testing, and the results were devastating." 

"Hurler's Syndrome is a degenerative disease that affects every part of a child’s body; bones, cognition, organs, heart, hearing, eyes. There is no cure. Without treatment, most children pass away before they are 10 years old,” Laura says.

Treatment and medical therapies for Kathryn began immediately, which also included a necessary transplant.  

“Kathryn started an enzyme replacement therapy immediately and had a bone marrow transplant when she was 2 and a half years old. We were in the hospital about six weeks, released for a week and then was diagnosed with Graft vs. Host disease of the GI tract and readmitted for another two weeks to be put on complete gut rest. Kathryn was then on partial or complete isolation for a year with limited contact with the outside world. Although the bone marrow transplant is not a cure for Hurlers, it does alleviate many of the symptoms and prolong life,” Laura states.  

As a Parent of a Critically Ill Child - "Will things get worse? Will there be a cure?"

The mother notes the extensive difficulties of being a parent to a critically ill child.

“Kathryn has 19 different specialists that she sees. She has had 6 surgeries. She has had chemotherapy and a bone marrow transplant. Her heart is still not functioning properly and she’s on several medications which she will probably be on the rest of her life.  In addition to all that, Kathryn was also diagnosed with high-functioning autism and dyslexia.  She weekly attends Occupational therapy, Speech therapy, and tutoring just to stay close to an academic and physical level of her peers, but she still struggles.”

Medication costs and taking time off for doctor’s appointments also pose challenges for Laura and her husband, Kevin.

She says, “We struggle with having enough time to spend with Kathryn and her brother, especially as both my husband and I work full time and much of our PTO is spent taking Kathryn to doctor appointments. There is also a very real financial impact to her disease. We are lucky to have excellent insurance, but even so we spend hundreds of dollars each week just on therapies and medicines. We were luckily able to change a few of Kathryn’s prescriptions, but before that some medicines cost thousands of dollars every month.”

“As a parent, I always feel like I’m letting everyone down – my job, my daughter, my son, my husband, because there just isn’t enough of me to go around and devote the time I want to everyone and everything.  And there is of course, the very real concerns about the future. What will Kathryn’s life look like?  Will she be able to have a normal, happy life?  Will things get worse? Will there be a cure?  Will it matter for her in the long run? There are a lot of worries that float around in the head of a critically ill or chronically ill child,” Laura reflects. 

The Incredible Kathryn

Today, Kathryn has shown incredible progress both medically and academically.

“When we first found out about Hurlers, Kathryn was tracking at least 6 months behind her peers. With many doctor appointments, a bone marrow transplant, isolation for a year, and then of course a pandemic, struggled to fit in with her peers and to keep up academically.  This was all complicated by a high-functioning autism diagnosis. With a lot of therapies and tutoring, a supportive extended family, great neighbors, and teachers, and a set of family friends who showed great care for Kathryn, she is currently almost on par academically and socially,” Laura states.

She continues that her daughter, “works so hard to just stay afloat, but she is in general education and has made huge strides in learning to read and do math in the past year. In terms of her medical issues, she is also really overcoming the odds.  While most individuals with Hurlers experience extreme issues with their back, neck and spine, she seems to have avoided this aspect.  Her heart, which was in failure during transplant, is functioning at a normal level. Her organs look great and the corneal clouding that she once had is now gone.”

“Kathryn is currently doing really well and many of her organs and bones are either stable or have corrected themselves.  We don’t know what the future holds, but we take every birthday as a gift.”

Laura concludes that her daughter is an amazing kid and, “she is happy and social, friendly and loving, smart, and funny. Sometimes she comes out with phrases that make her sound like a little adult.  She loves to ride her scooter and going to Girl Scouts. She loves her brother, although she likes to be able to boss him around."

"Kathryn is just an incredible girl and I’m so grateful she’s in my life.”

You can help bring lasting memories to critically ill children like Kathryn - click here!