Jaime Sheeder's Page

Hello aHUS family.
My name is Jaime Sheeder. My husband is Chris and I have one son Nickolas. My son is one of four in my family to be diagnosed with this disease. Two have sinced passed on and I have one adult cousin diagnosed only three years ago. Nickolas was born in December of 2001 and at 10 months diagnosed. It was horrible we had no idea what caused it or anything. All we knew is that this was a genetic issue amongst the 80+ family members in our family.
Finally in 2005 when Nick had been pheresing anywhere from two to four time weekly we had blood drawn and sent to Italy for genetic testing to look at Factor H amongst other culprits. We received word that his Atypical HUS was the result of a Factor H gene mutation. With this information we also knew our days were numbered with Plasmapheresis and was nearing closer and closer to ESRD.
With our new information we begin looking at liver/kidney transplants and centers. The data at that time was grimm and no powerhouse would even consider such a risk. Thankfully in June of 2006 we were handed a miracle. Mount Sinai hospital and Clinics performed the world's first successful transplant. We were fortunate enough that the doctor in New York was a fellow under our doc in Texas at the time. We began talking to them and went and met with the teams in July '06. A week after our returm the phone rang and the team would take Nickolas on and they immediatley began work on the appeal process for the Organ committee. It took less than a week for the approval.
On August 23rd, Nick and I flew to New York and awaiting our precious gift while continuing Plasmapheresis two times a week. By the grace of our Lord two weeks and a day later my son received his phone call. September 9, 2006 Nickolas was transplanted. Was the second in the US and thrid in the World. His surgury was 12hours 9 min. Could not of gone better. Did we have a few minor issues you bet. But the aHUS was gone, he was cured of his disease.

NOW he is seven and nearly three years has passed. We have had one liver rejected that turned itself around and is on the lowest doses of Prednisone, Prograf and Cellcept. We are going to be removing the native kidneys this summer in hopes to eliminate the hypertension. Have we have our share of problems yes. He has an eye disability now wears progressive lenses, starting eye therapy. We have to thave teeth pulled and orthdontia work done.

Is this option right for everyone no. With modern medicine and the drugs out only a kindney may be necessary. Who knows. We have made it our goal to pass it forward and do whatever we can to help, support and be there for families plagued by this disease.

God Bless you all.