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Each and every donation is greatly appreciated and helps a family in need.
We are raising money for Rylee Lynn Noble's Medical expenses. We are hosting Crushing Clays for Rylee at National Shooting Complex in San Antonio on 8/24/2019. Please click this link to register.
Bellow is a note from Rylee.
Hi, my name is Rylee, I’m 10 years old. January 10, 2019 was the day that changed my life forever. I was diagnosed with mucopolysaccharidosis, or MPS for short. MPS consists of 7 different types and I have Type 1. MPS 1 is classified as Hurler Syndrome and there are three different subtypes that range in severity; Hurler, Hurler-Scheie, and Scheie. I have the Scheie onset which is the mildest one. MPS is currently only impacting my skeletal system; however, because this is a progressive and non-curable disorder, it will eventually affect my central nervous and cognitive system. I am currently undergoing Enzyme Replacement Treatments (ERT), which help to slow down the progression of this disease and the effects it has on my skeletal system. Unfortunately, once it hits my central nervous and cognitive systems, the enzyme replacement treatments will no longer be beneficial to me. I pray that a treatment that has the power to penetrate the blood brain barrier will be discovered soon. I currently have to travel from Corpus Christi, Texas to Herman Memorial in Houston once a week to receive my Enzyme Replacement Treatment (ERT) and I will have to receive ERT once a week for the rest of my life, as there is currently no other treatment option for MPS Type 1. I am hoping that once I pass the six month trial, I can start receiving my treatments closer to home at Driscoll Children’s Hospital, if they accept me as a patient. The diagnosis of MPS consists of a simple blood and urine test. My hope is that because this is a genetic disorder, Texas will start to include this blood and urine test on the NBS (Newborn Screening) blood panel, which is administered at birth. Presently, only 53 out of more than 8000 known rare disorders are included in the NBS panel. Because MPS is a progressive genetic disorder, if it had been included in the NBS blood panel testing I received as a baby, my enzyme replacement treatments could have been initiated much sooner and it would have given me a better fighting chance to slow down the progression of my MPS 1. I am proud and blessed to become a voice for MPS, because a majority of pediatric patients living with this disease do not live beyond 10 to 15 years old. I love to dance and I know that even though MPS is, and always will be a part of me, it does not define me or who I am.
Rylee's medical and travel expenses are currenlty around $8,000 a month. She will need treatment for an extended period of time.
Any donations are greatly appreciated.