"This is great news. May Mine be blessed with continuing good health and a normal childhood. May there be only dreams come true from now on."
Retha Vosloo's Page
Latest Activity
Cheryl Biermann commented on Retha Vosloo's blog post Our miracle happened"Congratulations to all! Thanks be to God that he allowed the wonder of modern medicine to work in Mine's life! "
Dana M Simone commented on Retha Vosloo's blog post Our miracle happened"Retha - Mine's story is so inspirational - what a courageous young girl (and, mom!) You have certainly been blessed - keep your strong faith!
"
Linda Burke commented on Retha Vosloo's blog post Our miracle happened"Retha,
What a wondrous blessing in your life to have Mine receive the gift of life through a kidney-liver transplant! May your sweet girl see all her dreams of a happy, healthy life come true......and know that we are all glad that your…"
Retha Vosloo posted a blog postOur miracle happened
I have very good news to share with everyone. My little girl Mine Vosloo was diagnosed with aHUS Sept 2009. She had factor H problem. In three days time her kidneys has shut down and she was very ill. After she was diagnosed with aHUS we spent 10 months in hospital not even going home for an afternoon. She had in total about 29 blood transfusions and plasma pharesis and transfusions. Her blood pressure was very high and she started getting very bad fits. I was so lucky to find a doctor…See More
Cheryl Biermann left a comment for Retha Vosloo"Wow! This is wonderful-we all look forward to details, details, details, and don't forget pictures!!! Praise God for answered prayers!"
Linda Burke left a comment for Retha Vosloo"Retha,
Such wonderful news to hear of Mine's transplant, and we're so very happy for your family! Given that this is such big news to all of the aHUS community, please consider adding a blog (with photos) on the main page of this…"
Retha Vosloo commented on Linda Burke's blog post Announcing Our Press Packet Project"Good morning everybody. This is an update on my little girls condition. This diseade almost killed her but I'm so exited to tell you that Mine had a Liver and kidney transplant 5 weeks ago and she is doing so well. Her skin looks different and…"
Deborah Deffenbaugh commented on Retha Vosloo's blog post Minè still in ICU"I'm glad you are home from the hospital. Things will improve with her pressure, it just takes trial and error with meds. My daughter Alyssa was initially on 21 pills and then dropped once they started her on a clonidine patch and tecturna. She…"
Linda Burke left a comment for Retha Vosloo"Wooo Hooo!!
It's wonderful news to hear that Mine is out of ICU and is at home with her family! Please feel free to write an updated blog whenever you have time - sometimes it helps to share our stories, and we always enjoy the cute photos of…"
Retha Vosloo commented on Retha Vosloo's blog post Minè still in ICU"Miné came out of ICU a week ago and we are at HOME out of hospital. She is eating well and blood pressure is under control. She goes for dialysis 3 times a week for 3 hours. I thank God and all of you for your thoughts and support. All of us…"
Colette Ann Frysz commented on Retha Vosloo's blog post Minè still in ICU"My daughter when she was first diagnosed spent two months in the ICU. Her blood pressures were out of control. She was on an intravenous blood pressure med and still her pressures were never lower than 200+/100+.
She experienced pressure problems…"
Retha Vosloo commented on MARCIA AGUALLO BAKER's blog post Benjamin in serious trouble :("I feel your pain in my heart. This is the moment you want to scream at God and beg him to help. Just remember, he as already planned your little boys life and no matter how hard everybody tries, what God planned will happen. God gave you the strengh…"
"I hope Mine is getting better little by little. I'm so sorry you and she and all who love you both are experiencing this, my prayers are with you."
"Retha-
my prayers will stay with you as this is no easy situation to face, especially for your little girl. The high blood pressure thing will get better as time goes by, with the help of prayer and hope, keep that head up mama you will get stronger…"
Profile Information
- Birthday
- January 30
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Retha Vosloo's Blog
Our miracle happened
I have very good news to share with everyone. My little girl Mine Vosloo was diagnosed with aHUS Sept 2009. She had factor H problem. In three days time her kidneys has shut down and she was very ill. After she was diagnosed with aHUS we spent 10 months in hospital not even going home for an afternoon. She had in total about 29 blood transfusions and plasma pharesis and transfusions. Her blood pressure was very high and she started getting very bad fits. I was so lucky to find a…
ContinuePosted on June 6, 2011 at 2:49pm — 4 Comments
Minè still in ICU
My little girl is still in ICU because of her high blood pressure. We getting on top of the extra flued but the blood pressure still goes high. She is on 29 blood pressure tablets a day in you count them and the drip which they will stop today to see what will happen. Her kidneys is not improving even thow she is passing more urine her urea and creatinine is still high. She had 6 fit attacks in 12 hours after her brain has swolen and she had water on the brain.and luckily nothing after that.… Continue
Posted on July 9, 2010 at 9:23am — 12 Comments
Comment Wall (7 comments)
- At 10:44am on May 18, 2011, Cheryl Biermann said…
- Wow! This is wonderful-we all look forward to details, details, details, and don't forget pictures!!! Praise God for answered prayers!
- At 10:12pm on May 17, 2011, Linda Burke said…
Retha,
Such wonderful news to hear of Mine's transplant, and we're so very happy for your family! Given that this is such big news to all of the aHUS community, please consider adding a blog (with photos) on the main page of this website.
Congratulations on this life-changing event - many Mine have many decades of happiness and good health in the coming years!
- At 2:13pm on July 29, 2010, Linda Burke said…
- Wooo Hooo!!
It's wonderful news to hear that Mine is out of ICU and is at home with her family! Please feel free to write an updated blog whenever you have time - sometimes it helps to share our stories, and we always enjoy the cute photos of our aHUS kids!
- At 4:59pm on June 26, 2010,
Jooste Vermeulen said… - Hi Retha,
My personal email is jooste@polka.co.za and my cell is 0768972021 Please give ma a call.
- At 12:24pm on June 26, 2010, Cheryl Biermann said…
- Hi Retha,
If the doctors are thinking of removing the kidneys do not be afraid of this, it is the thing that puts the disease to rest. Of course, no one wants to give up, but I was more than happy to see Nathan's kidneys go. He is so much healthier now and doesn't need to spend so much time away from the family and friends while in the hospital. I hope you keep us updated, so you all will have lots of support as you go through these difficult times.
- At 2:46pm on June 24, 2010, Jooste Vermeulen said…
- Hello Retha, ek is in Kaapstad en ons seun Rijk is al 4 jaar met aHUS. Byt vas julle gaan OK wees. Wat is julle nr? My Cel is 0768972021 By my asb of ek sal jou bel. Rijk was ook 14 dae in ICU en hy is daardeur.
- At 1:40pm on June 24, 2010, Linda Burke said…
- Hello Retha,
I am so sorry that your child is currently in ICU, my thoughts and prayers are with you. Joose V. is a parent in Cape Town, so perhaps you can discuss treatment options that might be available in your country. Please feel free to ask questions and post comments, we look forward to your participation.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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