Started this discussion. Last reply by Grace Sep 30, 2014.
Started this discussion. Last reply by Linda Burke Jun 29, 2009.
As mother to two young boys diagnosed with aHUS, I've been blessed to have wonderful family, friends, and medical personnel offer support and encouragement as we've struggled to understand and to cope with this rare disease.
Hunter was diagnosed Sept. 2003 at 10 months of age and was in continual treatment until his death in May 2008 at age 5 and a half years old (attempted kidney/liver transplant). Hunter was a clever and handsome boy whose zest for life usually meant he was in constant motion - preferably outdoors! Our wonderful team of pediatric nephrologists, combined with excellent nursing care and support staff, allowed Hunter to enjoy a rich and joyful quality of life. Some of my husband's favorite photos show Hunter laughing with mischevous eyes and a smile that would just light up the room! Symptoms of his disease were few so even though Hunter had over 600 hospital visits in his short life, we celebrated the beauty and achievements that each new day would bring. Taught with great skill and compassion by the terrific staff at his Montessori school, Hunter found both knowledge and happiness there.
Sadly, Hunter's little brother Skyler was diagnosed with an active case of atypical HUS in March 2009, just 10 months after Hunter's death. Almost two years ago my husband and I agreed that it was best to send off Skyler's blood sample for genetic testing at the University of Iowa. If Skyler had the same genetic mutation (factor H) as his brother Hunter, that knowledge would be powerful information in terms of any potential problems. So, we were aware that the sword of Damocles was hanging over all our heads. No one knows the triggering mechanisms for aHUS, and we were stunned to hear that Skyler's lab tests revealed that somehow our worst nightmare was starting anew.
After eleven days of plasmapheresis (and over 40 units of blood), we opted to have Skyler try a course of Soliris as a new treatment avenue to explore. Within 48 hours of the first IV dose of Soliris, lab tests indicated hemolysis (red blood cell destruction) was halted and Skyler's labs steadily improved. Skyler received Soliris once every 2 weeks from April 2009 until May 2010 (we discontinued Soliris after over a years' worth of great labs). Even after a winter filled with classroom exposure to the usual coughs and colds, Skyler's lab tests show no sign of disease activity or the devestation that aHUS wreaks on the body. As Skyler was supposedly the 3rd aHUS patient in the world to experiment with Soliris (currently undergoing trials to earn FDA approval for aHUS patients), we are not sure how long Skyler's body can maintain this current state of excellent health - yet we are most grateful for this respite from aHUS, and know that we will chose to promptly restart Soliris therapy if lab values indicate aHUS activity..
Skyler celebrated his 7th birthday on June 28th, 2011 and has already lost several baby teeth! It also seems like just yesterday that the Tooth Fairy was paying a visit to Hunter. While our whole family misses him terribly, I believe I can best honor Hunter's memory by celebrating the warmth and joy he brought to our world. As for Skyler, our current plan is to keep enjoying his miraculous wellness, allowing Skyler to spend quality time doing important little boy work - like tossing stones into the mirrored beauty of an ocean ruffled by a crisp, fresh breeze.
Update July 2015: Skyler has just celebrated his 11th birthday and continues to enjoy an active life. Bright, engaging, a growing like a weed, Skyler maintains good lab values and health with no apparent aHUS activity.
Linda Burke: Founder of www.atypicalhus.org , the interactive site of
The Atypical HUS Foundation
Creator of Patient and Caregiver Resources (see tabs on this site)
RareConnect Moderator – RareConnect aHUS Community
NOTE: Until Dec. 2015, Linda Greene Burke served as this site's webmaster. Steve Greene (ALPHA Marketing) created this interactive aHUS networking communication hub in honor of his nephew, Hunter B. Burke (2002-2008). From its inception in 2009 until Dec. 2015, this network was sponsored by these two families and donated to The Atypical HUS Foundation to aid the nonprofit's mission for support and outreach to aHUS patients, caregivers, and families.
At the end of December 2015, all assets created and maintained by the Greene and Burke families have been fully and freely donated to The Atypical HUS Foundation, with all rights and responsibilities. Linda Burke continues to volunteer with multiple efforts and groups that support aHUS patients, families, and issues. She remains a moderator of the global aHUS webpage at www.RareConnect.org and is an active participant with the aHUS Alliance. to include writing on aHUS global topics for the aHUS Alliance website.
Contact Linda Burke
On Twitter with aHUS global News & Insights at: @aHUSAmerica
2016 aHUS Awareness Day - 24 September
Information & Resources
The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…Continue
Posted on August 29, 2016 at 10:00am
24 September 2016 will mark the 2nd annual world aHUS Awareness Day. Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,
From the 2016 August 24 Press Release:
"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…Continue
Posted on August 24, 2016 at 7:50am
The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS. Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.
While national aHUS advocacy groups remain paramount for…Continue
Posted on June 6, 2016 at 3:04pm
24 September 2016 is international aHUS Awareness Day.
This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare…Continue
Posted on May 31, 2016 at 9:34am
The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.
Register here: …Continue
Posted on May 21, 2016 at 1:17am