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Posts tagged blood disorder

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.

The Matthew and Andrew Akin Foundation Is On A Mission!

Business Mission The story of the Akin family’s battle with HLH starts in August of 2007.  This is when their youngest son Andrew became very ill with what first looked like liver failure.  It was soon determined that Andrew was actually suffering from a disorder called Hemophagocytic Lymphohistiocytosis or HLH.  Upon diagnosis, Andrew’s family would learn that HLH was a rare immune deficiency that needed to be properly treated in a very timely manner so that their son had the best chance of survival.

Over the next handful of months, Andrew would undergo two unsuccessful bone marrow transplants.  Although discouraging, these failed attempts only made the Akin’s desire to cure Andrew even stronger.  So, after doing some research, Andrews’s parents decided to transfer his care to the team of world-renowned HLH experts at Cincinnati Children’s Hospital.

In March of 2009, Andrew received a third bone marrow transplant under the care of Dr. Lisa Filipovich at Cincinnati Children’s.  It was soon discovered that the cause of Andrew’s HLH was due to a rare genetic mutation called X-linked Lymphoproliferative disorder #2 or XLP-2. Upon this discovery, it was recommended that Andrew’s older brother Matthew, also be tested for the mutation.  Unfortunately, it was determined that Matthew did carry the mutation and that it was only a matter of time before he would also fall victim to an HLH diagnosis.

To give Matthew the best chance of survival, doctors recommended that he undergo a bone marrow transplant while he was still healthy.  Matthew had his transplant in August of 2009. Not long after, Andrew developed severe pulmonary complications.  These complications sadly took Andrew’s life on September 5, 2009.

After Andrew’s abrupt death, Matthew battled to survive his bone marrow transplant for eight long months.  His battle was grueling and finally took his life on May 1, 2010.  Despite all of their efforts, the Akins had lost both of their boys, and that is what leads us to the mission of this foundation.

At the Matthew and Andrew Akin Foundation, the mission is two-fold.  First, they work to help support the HLH Center of Excellence at Cincinnati Children’s Hospital.  There, patients can find HLH experts that strive to fulfill the core priorities of providing research, education, and family support for those suffering from this life-threatening disorder.  Currently, the Akin Foundation is a part of some amazing initiatives taking place at Cincinnati Children’s.  These include: funding Dr. Rebecca Marsh’s study on XIAP deficiency; spreading awareness and educating families about HLH; and supporting families who are facing an HLH diagnosis.  The Akin Foundation believes that pairing with this team is making a difference for HLH families.

The Matthew and Andrew Akin Foundation has also set-out to give back to the many organizations that helped support them while their boys’ fought this terrible disease.  These organizations include the Be The Match Registry, the American Red Cross, and the Ronald McDonald House Charities.  All three of these organizations work with families facing a terminal illness diagnosis by providing resources that give hope and happiness during a very scary time.

When considering how you can help support those facing HLH, please remember the work being accomplished by the Matthew and Andrew Akin Foundation and the HLH Center of Excellence at Cincinnati Children’s Hospital.  Your support is what drives these organizations to accomplish their goals on a daily basis.  For more information on how you can help, feel free to click on the “Donate” icon located at the top of this page.

Choosing the Right Team When Battling HLH

Stethoscope And FamilyAny parent can agree that providing for their children is always of top priority.  This is especially true when you are the parent of a child who is battling a life-threatening disorder like Hemophagocytic Lymphohistiocytosis or HLH.  Hemophagocytic Lymphohistiocytosis or HLH is a newly discovered disease.  It is also rare and, sadly, is often misdiagnosed or diagnosed too late.  Children suffering from HLH do survive, but they must receive prompt diagnosis and effective treatment to do so.

So, what if you were the parent faced with this diagnosis?  Where would you go and what would you do to provide for your sick child in a way that would result in successful treatment and survival?  That’s when you need to know about the work being done at the HLH Center of Excellence at Cincinnati Children’s Hospital.  At Cincinnati Children’s some of the world’s leading experts on HLH work tirelessly for the kids fighting this disease.  These physicians and scientists are the answer to the prayers of so many looking for a cure and they intend to be that for all families facing an HLH diagnosis.

The four top priorities of the HLH team at Cincinnati Children’s is to provide a means to successfully diagnose HLH and provide excellent clinical care to HLH patients, to man the research projects needed to find out more about HLH, to educate and raise awareness around the disease, and to give families the support they need while fighting for the lives of their children.  All of these points work together so that more patients who face HLH will win the battle and go on to live normal, healthy lives.

If you, or someone you know is facing an HLH diagnosis and you don’t know where to turn, please contact the HLH specialists at Cincinnati Children’s Hospital.  The staff at the HLH Center of Excellence encourages families, patients, and other healthcare professionals to openly reach out with questions any time.  Make the choice so many other HLH families have made and get the care you deserve by talking with these professionals today.

Finding Success at Cincinnati Children’s

When Ashtyn was 7, her and her family moved all the way from their home in Minnesota to Cincinnati, Ohio.  Unfortunately, the move didn’t result from a job promotion or other exciting life event.  The reason Ashtyn’s family moved was because she had been diagnosed with the immune-system disorder HLH.

HLH is a fairly new and very rare disease that can be simply explained as being one in which a part of the immune system is either defective or missing.  Because of her diagnosis, Ashtyn was literally one in a million and needed the type of expert care that can only be found at Cincinnati Children’s Hospital’s HLH Center of Excellence.

Upon Ashtyn’s arrival, experts at the HLH Center of Excellence at Cincinnati Children’s promptly started the task of properly reviewing her case and making a decision regarding her treatment.  After this assessment, it was determined that a bone marrow transplant was what Ashtyn needed to survive.  This lifesaving procedure would work by replacing Ashtyn’s defective bone marrow with new bone marrow and result in her full recovery.

In the August after her diagnosis, Ashtyn received the bone marrow transplant she so badly needed.  The transplant was a success and Ashtyn can now live a life free of HLH.  Get more details concerning Ashtyn’s time at Cincinnati Children’s by watching the “Tell Me a Story” video below.