Melissa Hearn Female Lawrenceville, GA United States: Share on Facebook Share Twitter

Melissa Hearn's Friends

View All

Melissa Hearn's Events

4th Annual Hike for Hyde

April 14, 2012 from 9am to 2pm – Sawnee Preserve Park

Melissa Hearn's Page

Latest Activity

Destiny Floyd-Rakes and Melissa Hearn are now friends 8 hours ago

Destiny Floyd-Rakes commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

Hello, i hope its not to late to help out with pictures. i have many of Destiny. just let me know if you still need them and where to send would love to help and i also would like to learn more about how to start a fundraiser. For the foundation and…

yesterday

Svetlana Finley commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

I can send u some of our pictures, let me know what email to send to.

yesterday

Melissa Hearn commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

Thanks Jonathan and Vanessa!!!! I sent you both a friend request. Please accept so I can send you a message with my email address. Thanks so much for your help!!!

Monday

Vanessa Fawson commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

We'd be happy to. Send the email address and we will get them to you.

Monday

Jonathan Aguallo commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

We would be more than happy to send a few pictures. Just tell me where to send them.

Feb 4

Melissa Hearn commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

Absolutely! You already have my email address right? Anyone who needs it just message me and I'll send it. Thanks!!!!!!

Feb 3

Cheryl Biermann commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'

Can we email them Melissa? I just sent some to Bill this way for the st

Feb 2

Melissa Hearn commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'

SO Happy you are home. What a crappy week, and what a wonderful one year celebration. Looking forward to many more Kidneversaries to come!!!!

Feb 2

Pictures of AHUS kiddos PLEASE

Hi Everyone, I'm working on a new video to promote the Hike for Hyde, and had an idea to incorporate not just photos of Hyde and Bryan, but photos of as many kids as I can get to help show all the kids that the fundraiser benefits. If anyone would be willing to send me pictures to include in my video (slide show presentation), please send me a message through this site, and I'll message you back with an email address where you can email your photos. I would love to have 1 or 2 hospital pics…See More

Blog post by Melissa Hearn Feb 1

7 Comments

4th Annual Hike for Hyde at Sawnee Preserve Park

April 14, 2012 from 9am to 2pm

Fun family day in honor of Hyde Talbot and Bryan HearnSee More

Melissa Hearn is attending Phyllis Ann Talbot's event Feb 1

0 Comments

Melissa Hearn commented on Jessica Olivia Frysz's blog post 'My luck could possibly be changing'

Congrats on the new job! That's GREAT news!

Dec 2, 2011

DSCI0429

Photo posted by Melissa Hearn Nov 20, 2011

0 Comments

Melissa Hearn and Frank Reyniers are now friends Nov 20, 2011

Melissa Hearn and Crystal Ferreira are now friends Oct 17, 2011

Melissa Hearn commented on Svetlana Finley's blog post 'What hotel for conference?'

We haven't booked anything yet. Let you know. . .

Sep 20, 2011

Profile Information

Birthday: October 26

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 membership request involves business interests as I seek additional aHUS information for business applications.: n/a

My child ( or myself as a patient) is best described as:: Tested but Results are Inconclusive

Bryan

Bryan is 5 months old, and has been in and out of the hospital for the last month and a half with HUS. This seemed to be triggered by his 4 month vaccinations, and was first thought to be typical HUS, and then determined to be atypical. He has been doing plasma pheresis treatments for two weeks now, and is now trying something called aqua pheresis. He is currently being treated at Children's Healthcare of Atlanta at Scottish Rite. I'm interested in networking with other parents of children with atypical HUS, and learning more about the disease, etc.

Melissa Hearn's Photos

Loading…

Melissa Hearn's Blog

Pictures of AHUS kiddos PLEASE

Hi Everyone,

I'm working on a new video to promote the Hike for Hyde, and had an idea to incorporate not just photos of Hyde and Bryan, but photos of as many kids as I can get to help show all the kids that the fundraiser benefits. If anyone would be willing to send me pictures to include in my video (slide show presentation), please send me a message through this site, and I'll message you back with an email address where you can email your photos.

I would…

Continue

Posted on February 1, 2012 at 4:30pm — 7 Comments

A couple updates

Hey all,

Sorry I've been absent for a while. Getting too caught up in life I guess. . .

Anyways, there's been some good news for us - Bryan's Soliris has been covered by the new insurance company trough April 19th. At that point, we will need to submit more paperwork showing that the drug is still working, but I suspect that that is just a formality and things will continue without a hitch.

The less exciting news is that his Soliris infusion didn't go very well last… Continue

Posted on January 28, 2010 at 1:13pm — 7 Comments

Ready for Iowa

Bryan's numbers continue to look good.
Here's his latest:

Na 138, K 4.6, Cl 102, CO2 21, Ca 10.8, Albumin4.5, BUN 13, Creatinine 0.41, Hemoglobin 9.6.

I look forward to seeing everyone in Iowa tomorrow!

Melissa

Posted on October 15, 2009 at 10:09am — 2 Comments

Comment Wall (17 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 9:38am on December 16, 2010, Wendy Flinn said…: Happy Holidays Melissa and Bryan! Wishing you a healthy holiday season :)

At 9:13am on May 20, 2010, Wendy Flinn said…: Hi Melissa. It sounds like our sons are kind of alike with their aHUS. My son has no known genetic mutations either and his HUS was triggered by his vaccines too. They won't document that in his record but I know that what it was. His immunologist said that was most likely what it was too. I will pray for your adorable baby boy. He's is so cute. I am happy for you that the soliris is working for Bryan. Thank God for modern medicine.

At 8:11am on March 17, 2010, maria vicenta carratala rios said…: Hi Melissa. Could you contact with me? I am a member of this page and I have a little child who has suffered four years ago ahus and a consequence taken off the kidneys, Now he has the possibility to use the Soliris, but I would like to contact because I do not know the secondary effects and so on.

At 3:06pm on October 25, 2009, Sylwia Antkowiak said…: I pressed enter to early... So when I read about Soliris it really makes me cry..if it only came out a little bit earlier maybe we could save Maya's kidneys as well. Now it's too late.Anyway have you heard maybe of any trials with Soliris on the transplanted patients? Thank you and speak to you soon.

At 3:04pm on October 25, 2009, Sylwia Antkowiak said…: Thank you Melissa for your kind and warm words. So happy I found this site, Once I started to read I couldn't finish and ended up going to bed at 4am.When I read about Soliris

At 3:24pm on October 19, 2009, Heather Still said…: Hi Melissa. It was great to meet you in Iowa and I hope your trip home went well.

At 12:15am on September 2, 2009, Linda Burke said…: Hey there!
So glad to hear that Minoxydil is doing the trick to keep Bryan's pressure in check - Hunter used that with success but did develop an "Eddie Munster" hairline (still kinda cute)! I'm hopeful that you'll be writing from home sweet home tomorrow. ;)

At 8:20pm on August 29, 2009, Jodi Kayler said…: Hi Melissa,
I'm glad to hear that home is on your horizon. I remember coming home after 4 months. I pulled in the driveway and bawled like baby! Our last month of our initial stay in the hospital was also due to uncontrolled blood pressure. We found a combination of multiple meds were the only thing that worked. I think we've tried every bp med in the book. The following cocktail is what works for us: Norvasc, Labetelol, Cozaar, Lisinipril. Coen does a lot better on multiple meds rather than larger doses of fewer meds. We also have isradipine as a emergency PRN incase his BP spikes (we never use it anymore). After we started Soliris, his BP has continued to slowly improve. We are still on all 4 meds but lower doses of all of them.

Hopefully, since you started Soliris early, and Bryan's creatinine is good, maybe you won't have long-term BP problems. If you have to give meds at home, let me know. I have lots of tips on how to get meds down babies. =)

BTW, I want to commend you for all you have learned in a very short time. It is clear that you've have been doing your research and learning all you can. I've found that being informed is absolutely critical in being able to communicate with doctors clearly--especially once your home and they rely on your updates.

At 7:11pm on August 27, 2009, Cheryl Biermann said…: Melissa, Congratulations on Bryan's recovery! I cannot believe how quickly these kiddos get after beginning on Soliris! Take care.

At 12:55am on August 15, 2009, Svetlana Finley said…: Thanks for update. Our doctors are waiting on Soliris for Anna, because of our incurance. I am glad to hear that Bryan will be starting very soon. Keep us updated.

No comments yet!

View All Comments

Welcome to
The Foundation for Children with Atypical HUS

Sign Up
or Sign In

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 "About aHUS" tab 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.

************************

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...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.

Badge

Loading…

Get Badge

Badges | Report an Issue | Terms of Service