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2nd Annual Quinn's Journey Golf Outing
Fri, July 14, 2017, 11:00 AM – 5:00 PM CDT
All monies raised will benefit Quinn Lucille Albert and her family. Quinn Lucille Albert entered the world on 3.15.16 and was diagnosed with a very rare genetic disorder called Rhizomelic Chondrodysplasia Punctata (RCDP) when she was 8 weeks old. There are less than 60 known cases worldwide; RCDP affects 1 out of every 100,000 births and is considered to be one of the rarest genetic disorders today. Research for RCDP is not government funded due to the uncommonness of the condition. RCDP is a largely isolated terminal genetic disorder that does not have a treatment or cure. RCDP is a form of dwarfism & affects many parts of the body including shortened limbs, Coronal Clefts, Cataracts, Slow Growth, Mental Deficiency, Seizures, Stiff and Painful Joints, Stippling of Bones, Respiratory Tract Infections, Aspirations, Heart Complications, and Hearing Loss. RCDP Children may have some or all of these characteristics and tragically this includes a shortened life span.
Quinn is just beginning her RCDP journey but has overcome more than most already. She had her first car ride an hour after her birth in an ambulance to Children's Hospital NICU where she stayed for 16 days. There she received a G-tube at just 10 days old as she is not able to latch properly & has a passive swallow which puts her at risk for aspiration. She has had bilateral congenital cataracts removed. Quinn was also on oxygen for 3 and a half months to fight off her pulmonary hypertension.
Quinn has weekly visits with her physical/occupational therapist and has visits with her pediatrician, ophthalmology, neurology, pulmonology, respiratory, cardiology, home health & other specialty doctors as needed since her birth. Our family recently travelled to a medical conference for RCDP this summer in Alabama. We learned of a clinical trial that has great potential to not only improve Quinn's quality of life but can prolong her life expectancy if successful. The funds that will be generously donated will allow us to cover upcoming medical & travel expenses for the clinical trial.