Nicholas Richards, who has Down Syndrome, is 25 years old and live in Marietta, Ga. In 2007, Nick was diagnosed with advanced Keratoconus. On July 14, 2008, Nick's right eye developed hydrops . For weeks we struggled to keep Nick from rubbing his painful hydrops eye. The more he rubbed the more painful it became. Nick didn't understand the damage he was doing to his eye. All he knew was that it hurt and he needed to rub it. We tryed every thing we could think of from place his arms in cardboard tubs to splitting his arms with soccer shin guards. Then on August 3, we saw a lady in Home Depot with her arm in a half cast. That was it! our blessing had been answered. We needed her other half cast so Nick could not bend his arm to touch his eye. On Monday, August 4, Nick's dad called The Center For Orthopaedics & Sports Medicine office, in hopes they would hear our desperation cry. When, Master Caster, Paula Owens said, " come in Tuesday, at 7:45am", we knew that God heard our prayer. So on August 5, we minimized the further damage that Nick might have caused by having the half casts made for his arms. This video of Nick having his casts made was a Thank you Orthopaedic Doctor, Dr. Craig Weil and Mast Caster, Paula Owens for responding so quickly to our cry for help with their generous caring heart and technical knowledge. Normal care for a person whose eye has suffered a hydrop is a cornea transplant. We will update you, if this surgery is a possiblity.
While Nick's left eye has not yet suffered a hydrop, the keratoconus(KC) disease is till progressing and thinning his cornea. A new, less invasive procedure called Corneal Cross-Linking(CXL) shows promise for treatment for keratoconus. It strengthens the cornea and halts the disease. The CXL is approved outside the US but only in clinical trials in the US. Because Nick's keratoconus is in the advanced stages and doctors have been unable to measure the thickness of his corneas, this CXL procedure for Nick will be determined in the near future.
Dr. Doyle Stulting, at the Emory Eye Center in Atlanta, Georgia, is the lead investigator for the CXL clinical trial. In January,2008, Emory Eye Center was the first U.S. site to conduct keratoconus trials. Dr. Stulting and his medical team are pursuing a compassionate exemption, because Nick does not qualify for the trial, so he could possibly receive this treatment. This exemption statues will require time and resources. Keep Nick in your prayers and if you can donate to our local disability organization (Right In The Community) in dedication of Nicholas Richards. We will post any updates.
Wednesday, September 10, 2008
Nick's Story
Nicholas Richards, who has Down Syndrome, is 25 years old and live in Marietta, Ga. In 2007, Nick was diagnosed with advanced Keratoconus. On July 14, 2008, Nick's right eye developed hydrops . For weeks we struggled to keep Nick from rubbing his painful hydrops eye. The more he rubbed the more painful it became. Nick didn't understand the damage he was doing to his eye. All he knew was that it hurt and he needed to rub it. We tryed every thing we could think of from place his arms in cardboard tubs to splitting his arms with soccer shin guards. Then on August 3, we saw a lady in Home Depot with her arm in a half cast. That was it! our blessing had been answered. We needed her other half cast so Nick could not bend his arm to touch his eye. On Monday, August 4, Nick's dad called The Center For Orthopaedics & Sports Medicine office, in hopes they would hear our desperation cry. When, Master Caster, Paula Owens said, " come in Tuesday, at 7:45am", we knew that God heard our prayer. So on August 5, we minimized the further damage that Nick might have caused by having the half casts made for his arms. This video of Nick having his casts made was a Thank you Orthopaedic Doctor, Dr. Craig Weil and Mast Caster, Paula Owens for responding so quickly to our cry for help with their generous caring heart and technical knowledge. Normal care for a person whose eye has suffered a hydrop is a cornea transplant. We will update you, if this surgery is a possiblity.
While Nick's left eye has not yet suffered a hydrop, the keratoconus(KC) disease is till progressing and thinning his cornea. A new, less invasive procedure called Corneal Cross-Linking(CXL) shows promise for treatment for keratoconus. It strengthens the cornea and halts the disease. The CXL is approved outside the US but only in clinical trials in the US. Because Nick's keratoconus is in the advanced stages and doctors have been unable to measure the thickness of his corneas, this CXL procedure for Nick will be determined in the near future.
Dr. Doyle Stulting, at the Emory Eye Center in Atlanta, Georgia, is the lead investigator for the CXL clinical trial. In January,2008, Emory Eye Center was the first U.S. site to conduct keratoconus trials. Dr. Stulting and his medical team are pursuing a compassionate exemption, because Nick does not qualify for the trial, so he could possibly receive this treatment. This exemption statues will require time and resources. Keep Nick in your prayers and if you can donate to our local disability organization (Right In The Community) in dedication of Nicholas Richards. We will post any updates.
