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Monthly archives for July, 2014

Success Happens at the HLH Center of Excellence at Cincinnati Children’s

baby with mom and doctorAre you looking for a proven program that will be able to not only diagnose, but properly treat and possibly cure an HLH or hemophagocytic lymphohistiocytosis diagnosis? If so, the HLH Center of Excellence at Cincinnati Children’s Hospital can help your family.  At Cincinnati Children’s you will find a team of world-renowned HLH experts who have devoted their professional careers to the topic of HLH.  This team of doctors, scientists, researchers, and support staff will welcome your family and do everything it takes to successfully send your child home healthy.  That is their mission and they take this mission very seriously.

Countless families have entered the HLH Center of Excellence with great uncertainty.  The overwhelming thought of your child being so sick is almost unimaginable.  Yet, the experts at Cincinnati Children’s take these families in and help them overcome the impossible.  Here are just a few stories of success from these families.

The day before Miabelle was to celebrate her first birthday, her family was given the news that she was battling the rare immune disorder HLH.  For the next 18 months, Miabelle’s family would live in Cincinnati so that she could receive care from Cincinnati Children’s.  Miabelle’s cure would came from a successful bone marrow transplant.  She is now healthy and happy living out her childhood in her New Jersey home.

At the age of 3, William was admitted to Cincinnati Children’s Hospital in very dire condition. His liver was failing and within weeks of his hospitalization he had to undergo numerous blood transfusions in order to stay alive.  Testing would soon reveal that William had fallen victim to HLH and would need aggressive treatment.  Thanks to the fact that William’s brother, Charles, was a perfect bone marrow match, he was able to get the treatment he so badly needed. Charles experienced a flawless bone marrow harvest procedure and William quickly recovered from his transplant.  In fact, William went home only two weeks later and is now considered cured.

After a bad case of the flu, Sean just couldn’t fully recover.  He spent nearly a month in the hospital and that’s when the diagnosis was made.  Sean was 18 years old when he got the news that he was suffering from HLH.  After a successful bone marrow transplant, Sean is now a very normal young adult.  He has a passion for spreading HLH awareness and the importance of bone marrow donation.

To find out more about the HLH Center of Excellence located at Cincinnati Children’s Hospital, feel free to visit their website.  There you will be connected with information designed to assist your primary physician, research project details, family support topics, and much more!  This wealth of information has been created to assist families struggling with HLH and it is highly recommended that you start your research process there.

Here at the Matthew and Andrew Foundation, our volunteers work tirelessly to connect families dealing with HLH to the resources found at Cincinnati Children’s HLH Center of Excellence.  The hope behind this part of our mission is to get HLH patients the specialized care needed to result in their full recovery.  Our foundation’s mission also focuses on giving back to the many organizations that assist families during childhood illness.  Some of these organizations include the Be The Match Registry and Ronald McDonald House Charities.  Your constant support is vital to our mission and appreciated in so many ways. Please consider supporting our goals with a donation.

Cincinnati Children’s Is Supporting Families Facing HLH

Parent Holds The Hand Of A Small ChildIt isn’t a secret that the HLH Center of Excellence at Cincinnati Children’s is making a difference in the lives of those facing an HLH diagnosis.  As host to one of the world’s leading HLH programs, Cincinnati Children’s understands the ins-and-outs of this disease unlike most hospitals.  Thanks to this team’s focused attention on HLH, families are finding the many resources they need to improve the outcome for the tiniest of patients.

HLH or Hemophagocytic lymphohistiocytosis is a rare condition that quickly becomes fatal. As this immune disorder begins to attack a patient’s organs, it is imperative that a proper diagnosis is made and that a treatment plan is put into place.  This swift action is the only way doctors can effectively give hope to those fighting this disorder.

Resources to Consider When Choosing Cincinnati Children’s Hospital

There are a number of reasons why the volunteers at the Matthew and Andrew Akin Foundation so highly-recommend the services provided by the HLH Center of Excellence at Cincinnati Children’s Hospital.  Not only does Cincinnati Children’s employ some of the world’s leading HLH doctors and scientists, but they additionally provide extraordinary family support in the form of many other services.  One things for sure, at Cincinnati Children’s you will always feel welcome!

Coming to a new city to receive specialized medical care is a stressful task and the team at Cincinnati Children’s wants to assist you in reducing that stress.  This is so important because all of your attention needs to be focused on your sick child and not the ins-and-outs of visiting an unfamiliar city.  In order to do this, Cincinnati Children’s partners with a number of local service providers so that arranging lodging and transportation is much easier.  Out-of-town families even have access to complimentary and discounted tickets to some of Cincinnati’s most popular attractions.  What a fun way to relax and just enjoy your child!

Before coming to Cincinnati Children’s, you will want to make sure and check out the Family Support page accessed via the HLH Center of Excellence home page at www.cincinnatichildrens.org.  The Family Support page is filled with uplifting HLH Success Stories that will help you understand the loving care you can expect from this team.  While browsing the hospital’s online resources, you will additionally find an abundance of information about the disease, an overview of what treatment looks like, and details on current research projects hosted by the hospital.

More on the Matthew and Andrew Akin Foundation

The volunteers at the Matthew and Andrew Akin Foundation want to encourage you to consider the HLH Center of Excellence at Cincinnati Children’s.  Through personal experience, these individuals understand what HLH patients are facing and strive to connect them with the best possible care.  For more information about Cincinnati Children’s, we invite you to click on the “Why Cincinnati Children’s” link provided above.  There you will be re-directed to the HLH Center of Excellence home page.

For more information regarding how you can help support those fighting HLH, make sure to visit www.matthewandandrew.org. This site has been designed to give HLH families the important information they need to be connected to the HLH specialists at Cincinnati Children’s.  By spreading the word, funding research, and focusing on education, the Matthew and Andrew Foundation is finding ways to HLH less scary and more treatable.

Education Resources Related to HLH

Keep-educating-yourselfFacing an HLH diagnosis is a scary, life changing experience, but parents need to understand that they are not alone. There are a number of valuable resources that focus on assisting the patients and families of those fighting HLH.  A few of these resources include those provided by the Matthew and Andrew Akin Foundation and the HLH Center of Excellence at Cincinnati Children’s Hospital.

Both of these organizations are focused on providing top-notch attention and care to those fighting HLH via educational resources, emotional support, and awareness campaigns.  In fact, the Matthew and Andrew Akin Foundation supports and refers families directly to the world-class team at Cincinnati Children’s on a regular basis.  This combined teamwork is making HLH less of a stigma, and in turn is providing a brighter outlook for many children with HLH.

When you visit www.matthewandandrew.org, you will find a number of helpful resources. Some of these resources include: the story of the Akin family and how the Matthew and Andrew Akin Foundation began; information on the mission surrounding the Akin Foundation; details regarding the 700 Miles to Hope bike ride; facts about HLH; and information about the HLH Center of Excellence at Cincinnati Children’s.

When you visit the HLH Center of Excellence page at www.cincinnatichildrens.org/hlh, you will be given even more resources and information.  Here you will find more detailed information about: research projects currently taking place at the hospital; a family support page with HLH success stories; information about doctors and support staff; and valuable contact details that will put you in touch with the Cincinnati Children’s team.

There are additionally many more resources that you may find helpful during this battle.  Make sure to take a look at the following webpages:

  • www.histio.org – The Histiocytosis Association of America is the only organization in America whose sole purpose is to serve the needs of those facing a histiocytic disorder.
  • www.marrow.org – The National Marrow Donor Program is dedicated to providing the chance for all patients to get the bone marrow or umbilical cord transplant they need.
  • www.kidshopechest.com –  At Kids Hope Chest you’ll find all of the products needed to assist your child in staying away from germs in and out of the hospital.
  • www.hlhsupport.org – HLH Support is an organization aimed at helping patients and families in understanding and coping with HLH.
  • http://www.marrow.org/GIVING/Hendrick_Marrow_Program/index.html – The Hendrick Marrow Program raises money that is used to help get more people on the National Marrow Donor Program’s Be The Match Registry.
  • www.redcross.org – The American Red Cross exists to provide compassionate care to those in need.

If your child is facing a diagnosis of Hemophagocytic lymphohistiocytosis or HLH, educating yourself is great way to feel more secure in your ability to beat the disease. Understanding what HLH is about and how your child will be treated will bring you hope, awareness, and strength during a very difficult situation.  Take the time to explore the resources listed here and make sure to share the information with other members of your family.

At the Matthew and Andrew Akin Foundation, volunteers focus on two main goals.  These goals include supporting the work being accomplished by the experts at the HLH Center of Excellence at Cincinnati Children’s Hospital and to give back to the organizations that so graciously supported the Akin family during their personal HLH battle.  Please consider referring these resources to other families facing an HLH diagnosis by contacting the foundation via phone or email.