My name is Heather Still. I have been married to my loving husband, Jim since 1998. We have two children, Ryan and Kayla. Our son, Ryan, has battled Atypical HUS since 2002. He is a very rare case having mutations in MCP, Factor H, and Factor I. Ryan is now 12 years old and still maintains about 50% kidney function. When first diagnosed he needed frequent plasmapheresis in order to slow the attack. After several weeks of daily exchanges we slowly weaned him day by day to biweekly after a couple years. Once his labs remained stable we began plasma infusions. First a few times a week and slowly weaned him to biweekly infusions. We tried to decrease that frequency a couple of times and ended up with strong aHUS activity again. So he has needed biweekly infusions and has remained fairly stable with them for a few years now. He is on 5 blood pressure meds, iron, folic acid, and gets a monthly dose of Aranesp to help him produce RBC's.
I am very excited about this website and look forward to meeting new families and helping each other through our daily struggles. I have been an active member of the Foundation for Children with Atypical HUS since Ryan's diagnosis. My family does an annual fundraiser earning $10K-$13K each year. For the last 6 years it has been a golf tournament. The money we earn is just a small piece of the foundation which funds genetic testing and research.
I am always readily available to answer questions, share information, and just listen if anyone needs help fighting this battle. It's never been easy, but as a mom I do what I have to in order to help Ryan win his battle.
After careful consideration our family has decided that we won't be able to host our annual fundraiser this year. I am entering the Nursing Program full time at a local college and my mother in law's plant that she works at is closing down right at golf tourney time so her time will be restricted also. We decided that we would rather cancel the tournament than to put on a ho-hum event that will disappoint our faithful supporters. I hope this doesn't impact the foundation financially and…Continue
Posted on August 8, 2011 at 11:03am — 3 Comments
Sorry, it's been a while since I've been on the site - people must think I've fallen off the face of the earth.
I posted pics for our golf tourney that we held late September. We raised $9000+ again this year for the foundation.
We've been toying with Ryan's infusions and tried spreading them out 4 weeks, but his lab results showed that was too long so we are going back to three weeks again. Hopefully that will keep things stable. Ryan started 6th grade this fall and it is a…Continue
Posted on October 19, 2010 at 4:52pm — 8 Comments
Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained…Continue
Posted on April 21, 2010 at 10:30pm — 5 Comments
Posted on March 23, 2010 at 10:04pm — 11 Comments
It's been a year now since we've had a inpatient stay with Ryan. I try not to say that out loud because I think it's bad luck, but I guess typing is really not out loud. For the past few weeks I have been following what I believe is the first patient since Ryan at our Children's Hospital with an Atypical HUS diagnosis. While reading updates on this little beauty's status I am quickly reminded of all the horrors that accompany the initial diagnosis. Not only the questions about the illness,…Continue
Posted on February 18, 2010 at 9:17am — 5 Comments