Princess Ryleigh: A Healthier-Ever-After Story
By her mother, Aimee Patience
My daughter Ryleigh was born in July 2004 and is now almost 8 years old. After several questions and curiosities about her health over three years, she was diagnosed with Hurler's Syndrome, or Mucopolysacchridosis Type 1, in October 2007.
Hurler's Syndrome is an extremely rare (1 in 150,000 live births) genetic condition where an enzyme does not function correctly, causing mucopolysaccarides (sugars) to build up in the body. Ryleigh's condition affects nearly every system in her body, it is chronic and there is no known cure. So, as you can imagine, we were devastated to learn this diagnosis. However, one of the first things Dr. Laurie Smith shared with us is that 10 years ago there wasn't even a treatment.
Because of places like Children's Mercy, we have a treatment plan to improve Ryleigh's prognosis. She received enzyme replacement therapy once a week (five to six hours at a time) via infusion at Children's Mercy for her first-year post-diagnosis.
Ryleigh fell in love with her infusion nurses, Debbie, Dena, Debbie, Kathy and Melissa. They were absolutely amazing, and Ryleigh was so well cared for (and a tiny bit spoiled). We were blessed to move our infusions to home care in December 2008. Every time we are at Children's for one of her many follow-up appointments, however, we must stop by Outpatient Infusion to give hugs to Ryleigh's favorite nurses (and likely snag a treat or two!)
Additionally, it seems like we have seen nearly every specialist at Children's Mercy:
Dr. Sarah Soden in Development and Behavioral Sciences; Dr. Robert Beckerman in Pulmonology and Sleep Medicine; Dr. Pam Nicklaus in Ear, Nose and Throat; Dr. Geetha Raghuveer in Cardiology; Dr. Christine Cheng in Orthopedics (hands); Dr. Brad Olney in Orthopedics (hips/knees); Dr. Nigel Price in Orthopedics (spine); Joey Ford in Hearing and Speech; Dr. Florin Grigorian in Ophthalmology; Wendy Honeycutt in Occupational Therapy; Radiology for an MRI of her brain and to place a central line for her weekly infusions; and Dr. Laurie Smith, Dr. Bryce Heese and Andrea Atherton in Genetics, who are responsible for generally keeping us organized.
Everyone has been so wonderful with her! Ryleigh loves to go to "her hospital," and I can't say that I disagree.
Children's Mercy has given us back the hope we lost in 2007 when Ryleigh was first diagnosed.
Ryleigh has become a completely different child since that October. She talks more, runs more and laughs more. She acts like a normal 7-year-old first-grader. She had her very first dance recital last June, began learning to water ski last summer, is in karate club at school and is starting her first softball season this year. All of these things, she tells us, "I am pretty good at."
We are very confident she will only continue to improve.
None of this would be possible without Children's Mercy. We are hopeful that, in her lifetime, a cure will be found for these and other devastating genetic conditions. Our family is so grateful for Children's Mercy and the excellent care that Ryleigh has received.
Thank you, Children's Mercy!
Ryleigh is one of the many children from Eastern Jackson County who visit Children's Mercy each year. Soon, kids in Eastern Jackson County will be just minutes from our newest clinic and urgent care location.