Submitted by Aimee, her mother

My daughter Ryleigh is 4 1/2 years old. After several questions and curiosities about her health over the last 3 years, she was diagnosed with Hurler's Syndrome in October of 2007. Hurler's Syndrome is an extremely rare (1 in 150,000 live births) genetic condition where an enzyme in the body does not function correctly causing mucopolysaccarides (sugars) to build up in the body. Her condition affects nearly every system in her body, is chronic and there is currently no 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 10 years ago, there wasn't even a treatment.

Because of places like Children's Mercy we have a treatment for her to improve her prognosis. She has received enzyme replacement therapy once a week (5-6 hours a time) via infusion at Children's Mercy. Although infusion days are long, Children's Mercy has been absolutely wonderful! The nurses - Debbie, Deanna, Kathy and Melissa have all been great as well. Additionally, we have seen nearly every specialist at Children's Mercy. Dr. Beckerman in Pulmonology, Dr. Eyen in ENT, Dr. Raghuveer in Cardiology, Radiology for an MRI of her brain and to place a central line for her weekly infusions, Ophthalmology for her eyesight, Wendy in OT for her joints and Dr. Laurie Smith and Andrea in the Genetics clinic for various checkups and physicals. Everyone has been so wonderful with her and has given us the peace and faith that there is hope for her.

Ryleigh is a completely different child since October of last year. She talks more, runs more and laughs more. We are very confident that 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 and the excellent care that Ryleigh has received. Thank you CMH!

Ryleigh is one of the many children from Eastern Jackson County who visit Children's Mercy Hospital each year. Soon, kids in Eastern Jackson County will be just minutes from the treatment and care they need. Click here to give to Children's Mercy East.