Three Things that Every Parent Should Know About HLH

Three Things that Every Parent Should Know About HLH

The Akin Family at home.

Within the span of eight months, my husband Justin and I lost both of our boys to a condition called hemophagocytic lymphohistiocytosis or HLH.

I often say that we have lived through every parent’s worst nightmare. Twice.

Today, in July 2013, it’s been almost four years since we said goodbye to Andrew, our younger son, and three years since we said goodbye to Matthew, our first-born.

In the time that has passed, I’ve spent countless hours replaying the events of the time we spent fighting HLH. I’ve asked myself what I wish I had known and if there is anything I would have done differently. And, although it is painful to do the “would of, should of, could of” thing, the truth is that if we had it to do all over again, there are a few things that had I known them at the beginning, may have actually changed the outcome for our boys.

The points below are not at all meant to scare you or indicate that every child who has a fever should be tested for HLH, please don’t go there! Rather, I want to simply be a little voice that will perhaps speak up sometime down the road when you hear of a child who isn’t getting better after the flu. Or you hear that a family has received an HLH diagnosis and they’re considering next steps.

So, with that said, here are the things I wish I had known:

1. The initial symptoms of HLH mimic the flu.

So many HLH parents’ stories begin the same way: our children are sick, not getting better and we are often dismissed with ‘it’s just a virus, they just need more antibiotics and time, they’ll be fine.’ It is important to keep in mind the most common symptoms of HLH are fevers, enlarged spleen, low blood counts and liver abnormalities. Many pediatricians and family doctors have never seen a case of HLH and they don’t know what to look for. If you think something more is wrong, speak up, push back and if the doctor hasn’t already done it, ask for a blood draw to do a complete blood count or CBC.

2. In my opinion, more than just knowing the list of red-flag symptoms, parents need to listen to their guts.

During an appointment after Andrew wasn’t getting better, our pediatrician initially wrote orders for labs the next day but I demanded Andrew get them done immediately. I knew something was very wrong. Within eight hours of that doctor’s visit he was in the Pediatric Intensive Care Unit with liver failure and only a 50% chance of survival. If I hadn’t pushed the doctor for labs immediately, Andrew might not have made it through that night. Parents know their children better than anyone else and that knowledge is valuable beyond measure. Advocate for your child. Ask for further tests and demand they be done quickly. Time is critical with HLH.

3. Care is different from one hospital to the next.

With a diagnosis as rare as HLH, the volume of patients treated in a center and thus the amount of experience a medical team has, matters immensely.

While I’ve definitely done plenty of reflecting in the last several years, I’ve been busy too. I wrote a book. We started a foundation and we became parents again via adoption.

The Matthew and Andrew Akin Foundation

Justin and I decided to start to The Matthew and Andrew Akin Foundation within two weeks of Matthew’s death. We had gone away to try and start to grasp everything that had just happened. We had lost both of our children within eight months of each other and we had just lived in and out of the hospital for thirty-three months. During the trip we talked a lot about helping the families who would unfortunately follow in our footsteps. We both knew we wanted to do something in their honor, something with their names attached, all the while letting everyone know what amazing children we had.

Our foundation is now a supporter of the HLH Center of Excellence at Cincinnati Children’s Hospital Medical Center. We want people to know how important it is to seek the care of Dr. Lisa Filipovich and the team of experts at Cincinnati Children’s. We are always grateful when families find and reach out to us for help in getting their child to Cincinnati for care.

If you happen to be the parent of a child who has HLH, please know that you are not alone in this journey. HLH is an aggressive and nasty disease. It usually sneaks up quickly and attacks fast and hard. But it can be fought, it can be beaten and there is no reason to think that your child won’t be the next HLH survivor. Be insistent in your child’s care and seek the experts at Cincinnati Children’s. It is not a guarantee for survival but it surely will increase your odds and that is the best you can hope for. Our biggest regret is not starting our journey there.

I can’t help but smile when I think about our amazing children. They would have adored their little brother. The admiration I have for them and the strength they displayed while they were sick is something I will never fully be able to put into words. I am grateful every day that I had the opportunity to be their mom.

Justin and I hope that people who learn about our story become inspired to become marrow donors and go out in their corner of the world to help others. We have lived through every parent’s worst nightmare, twice, but we are not only surviving, we are thriving. By channeling our grief and sadness into something positive, our children will live on forever and nothing feels better than that.

To learn more about how we treat patients with HLH or to speak with someone at the HLH Center of Excellence, call 513-636-2371.


In September 2013, Justin and Kristin Akin organized a 700 mile bike ride to raise money for the HLH Center of Excellence at Cincinnati Children’s. A documentary was created during the ride. 700 Miles to Hope – An HLH Journey captures the importance of the ride for everyone involved.

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Kristin Akin

About the Author: Kristin Akin

Kristin Akin lives in St. Louis with her family. She stays busy working on their nonprofit foundation, The Matthew and Andrew Akin Foundation, traveling as a courier with the National Marrow Donor Program and volunteering with the Ronald McDonald House Charities of St. Louis. She loves cooking and entertaining, traveling and just laughing as much as life will allow. In her next life, she will finally be the pilot she always dreamed of being. She hopes her family’s story will inspire many people to join, become regular blood donors and realize that with love, anything and everything is possible.

Write a comment


  1. Karen July 21, 15:37
    I'd like to start by saying, Thank you! Thank you for writing this blog. Thank you for sharing your tragic story. Thank you for making me feel not alone. And most importantly, Thank you for giving me hope! Our son was diagnosed with HLH in March. Later tests identified it as genetic HLH. He has a "never before seen mutation with unknown significance." He is in need of a BMT but we can only find a 9/10 match which lessens his chances for survival. So We have sent his paper work to Cincinnati are waiting to hear back from them. Please keep your fingers crossed!
  2. Elida Batista July 23, 02:57
    O and verry sorry krist my brautiful dougther in love die 6-12-13 is verry hard she die HLH I miss her so much
  3. Geoff Butler July 23, 07:17
  4. Niccole Justiz August 08, 00:16
    First I just want to say this is amazing and you give me so much hope. Your story touches my heart, with tears I am writing this. I wish I had more info as well when my daughter began to present at two weeks of age, almost 4yrs ago. She went undiagnosed for 15mos. We lived in the hospital. She was not diagnosed until I had my son who began to present the same way at three weeks of age. Both had BMTs and my daughter is now thriving. My son however was not as fortunate and we lost him last Nov. I always think to myself does it get better, does the pain of the loss ever become bare able, or will I forever feel like I can't wait to leave this earth to be with him again. People do not realize how HLH is really not that rare once exposed to the information on it. I thank the Lord for my daughter and my two older children who are just carriers. Thank you so very much for creating this blog and sharing your story.
  5. Sheryl Crawford August 08, 00:19
    Thank you for reaching out and educating others about HLH. My son is in the Air Force and came down with HLH 1 1/2 years ago and they kept telling him he had the flu for almost a week. It was so frustrating because I couldn't take care of him. They finally did a blood work up and put him in the hospital and then I was there with him. They operated on him for gall bladder and appendicitis. Of course there was nothing wrong with either one. I called his base commander and told home if he doesn't get out of this little hospital I'm afraid we will lose him and he was moved that night to Brooks Army Med. Center in San Antonio. It took another week in intensive care before they figured out it was HLH. They did finally diagnose him with HLH and he had steroids and Chemo for 6 weeks. My story had a happy ending because he has had no re-occurrence and is still in the Air Force. I am so sorry we can't have more happy endings. i am so very sorry you lost your precious boys. Thanks again for all that you are doing.
  6. Cindy August 19, 12:56
    Thanks for sharing! What a powerful story.
  7. b. long August 31, 14:54
    So sorry for your loss of two such beautiful sons. thank you so much for sharing with others and working to help too! Our beautiful baby boy was diagnosed with HLH January 7 2013.we too started with another hospital. although they brought him through from near death, we found they had very little experience with his illness. Shane also had a rare condition known as Chediak Hagashi. After the first meeting with Dr. Filipovich we knew where we needed to be. he is scheduled for the BMT the 10th of October. we are so grateful that we have Dr. Filipovich and all many skilled doctors and nurses at Cincinnati Childrens.we appreciate all prayers from so many who have loved and helped us thus far. there are many amazing people in this world. we know that Shane is in GODS hands. He will see us through this journey with Shane and I pray that the BMT will be a success. the miracle that we need. again we thank you for all you do. GOD bless you each day and i pray he will continue to give you the strength that comes only from our faith in him. would also like to say that Shane was diagnosed with Oculocutaneous Albinism type 2. this was not a surprise to us . we had suspected this before he was diagnosed. what we did not know, was that children with this condition could have Chediak Hagashi. if we had only known things could have been different for Shane. we were not told at the time of diagnoses, although we found that the pediatric ophthalmologist did know this was a possibility. Information that we feel should have been mentioned to us. she was devastated to learn of Shanes condition, but at that point it was too late. We were at first so angry and hurt, but that was not helping us. we just had to focus on were we were, not where we might have been. now with this information if anyone knows a family with a child with this condition......please inform them of this possibly! Again GOD bless you and your family and all others who are on this journey. love each other, draw strength from each other, pray and enjoy every SECOND that you have . we will keep you in our prayers.....Shane and family.....( TEAM SHANE ) !!!!
  8. Melanie Dembowski September 01, 18:27
    I was 36 weeks pregnant on July 31, 2013 and had a fever that was 102. I am 33 years old and have a 14 year old and a 7 year old. My baby boy Jaxsen was born at 12:56 am on August 1 due to my doctor thinking that I had a bowel rupture because of the fever and the pain I was in. He was healthy other than a little spot on his lung that they treated with antibiotics. He had a little oxygen put on him due to his breathing a little difficult but on day 3 he was free of everything and eating. On day 4 he started running a fever, and day 6 he was rushed to Children’s Hospital of the King’s Daughters. He was so sick that he stopped breathing and they had to intubate him. He received platelets, blood, plasma, and clotting factors and had 2 pic lines tried in his little leg that almost caused him to bleed to death. Nothing was helping him get better and on day 10 they diagnosed him with familial HLH. He was given steroids and chemotherapy but the damage done to his little liver was too much. On August 13, 2013 at 2:26 am, Jaxsen passed away during his second dialysis surgery. This is a horrible, horrible disease that no one should have to go through…my poor baby had iv’s in his head, hand, had 2 pic lines tried in his leg, a central line in his chest, dialysis line in his belly that failed, and bled to death from the dialysis put in his groin area and his neck. The only thing that I am glad of from reading everyone's sad stories is that Jaxsen did not have a lifetime of suffering. I am scared now that my other son who is 7 may have this…when he was 1.5 years old, he had a fever for 6 weeks and is ALWAYS sick..he was sick with a 104 temp for 3 days 4 days before I got sick and had the baby. Pray for us so that we can get tested and have a negative result.
    • Tracey March 28, 15:22
      Hi Melanie I've just read your story and have been wondering whether your older child also has HLH. I sincerely hope not. XXX
  9. Erin September 11, 21:08
    Thanks for sharing your story. I am so sorry for your loss. My son, Willem, died from complications brought on by his HLH. He was 10 years old. We had never heard of this disease and wish that we never would have. It was what they called secondary HLH so it was NOT genetic. He had a fever and was achy and vomiting and he just never got better. The doctors were never able to tell us how he got this awful disease. It just happened. It lasted 8 months and he passed away. Thank you for all you are doing to make people aware of HLH.
  10. Shafied Mohammed September 27, 16:57
    My son 21has hlh and had a stem cell from older daughter 24 yrs .he lost his kiney and my 15,yrs daughter has the same genes to get the hlh . Dortor say it can be trigger my son and my daughter Are sick .i need a micracle . Or super power .help?
    • Kate Setter
      Kate Setter October 03, 13:29
      Shafied, can you tell us where you are from? That will help us determine how to point you in the right direction.
      • Susan mohammed April 26, 01:57
        I am from New York I am the mom Susan Mohammed I am worried about my '17 year old daughter gets this hlh I had such a hard time with my son the stay in hospital 1 year with him in there so many infection after his b m t now kidney is damage on Dyalasis 3 times a week an imunsystem is sti not we're is suppose to be do think my son will go into remmision is his imun not 100 % I need help please
        • Rachel Camper
          Rachel Camper April 27, 08:24
          Hi Susan, Please contact the HLH Center of Excellence to see how they may be able to assist you. 877-920-3590 or
    • Gracy Guerrero June 08, 19:34
      Praying for your children... My 9month old Ryan has being diagnosed with HLH... He is doing good with treatment but now I'm worried if it happened again!
  11. Jan Turner October 01, 17:36
    Very touching in various dynamics!! My daughter also had 2 children with HLH, one of which was lost to HLH; the other has progressed after her transplant. It took the boy, who passed away, to be born for the other to be diagnosed. So she battled with the disease for almost 2 years before being diagnosed properly. She amazingly made it and he did not.The 2 of them were in & out of the hospital (more in than out)which was one of the crazy dynamics to this situation. Thank you for turning your horrific journey into a positive outreach to others who experience this devastating disease.
  12. […] Claire Biagnardi is a little girl from St. Louis who likes to put on sunglasses and ham it up as she plays her toy guitar. But the 3-year-old is providing big inspiration for a group of men who are bicycling 700 miles in 7 days to raise awareness about a deadly disease called HLH. […]
  13. […] Claire Biagnardi is a little girl from St. Louis who likes to put on sunglasses and ham it up as she plays her toy guitar. But the 3-year-old is providing big inspiration for a group of men who are bicycling 700 miles in 7 days to raise awareness about a deadly disease called HLH. […]
  14. Casey December 31, 03:24
    My name is Casey and I lost my 7 year old to acquired HLH. She got sick with a fever, we were told it was viral if still running a fever friday bring her back in that was on Nov. 12th took her back on the 15th still with a fever. Sent us to ER because blood work would take a few days were admitted that night with a platlet count of 37. Did a bone marrow biopsy on the 16th. Found out it was not cancer and were sent home on the 21st the dr called and told me that my daughter had mono and could go back to school on dec 7th. Had an appt to have her blood rechecked on monday the 25th. Was re-admitted the 25th she had started showing signs of Jaundice. were going to put her to sleep and intubate her at 1 pm on the 26th because her breathing was getting worse. they gave her the meds to put her to sleep and she crashed 2 times. were told if she stablized that they would attempt chemo drugs. Drs administered chemo drugs and 30 minutes later she crashed again and we were told that if she crashed again there would be no bringing her back. A part of me died that night. I will never be able to erase the memory of her laying there with all those tubes in her. I was holding her when she took her last breath and her heart stopped at 5:44 p.m. on Nov. 26th. Two days before thanks giving and a little less than a month before christmas. It is so hard to go on. Thank you for sharing your story and I am so very sorry for the loss of your boys.
  15. Tammy January 02, 17:31
    I have a 19 son. He has secondary HLH ... I wrote his story but it didn't post. Tooooo long to rewrite but this Medication saved his life so far over one year now! KINERET (ANAKINRA). Prefilled injections daily. Hope this helps.
    • Karie Stribley November 27, 22:19
      Just recently,my daughter, Jami, 14 years old also came down with Mono and temps as high as 105.6 and it triggered HLH SECONDARY.Had liver failure, some other organs started to fail, but started her on Kineret and all organs started functioning again. We have been in the hospital for the last month and waiting on the results of the bone marrow biopsy. Doctors don't know how long she will be on the Kineret. She could also relapse with another infection. Gofundme/jamirae
  16. Patrice C. Lekas January 10, 04:01
    On Tuesday September 4, 2007 at 6:22pm, my 17 year old daughter was pronounced dead as a result of HLH. She complained of a sore throat on Monday, by Wednesday reached a temperature reached 103.7. After 3 ER visits to Kaiser, they diagnosed her as having infectious mononucleosis. By Tuesday she was dead just 2 weeks before her 18th birthday. I hope other parents read each and every word of this blog. My thoughts are with you all and eish you peace and an amazingly calm future ahead. Thank you for reading this comment. -Peter Lekas
  17. Peter J. Lekas January 11, 00:11
    To Casey: Although my heart breaks for all the families who have lost children, your story in particular grabbed hold of me because the description of your daughter being intubated, fever, difficulty breathing, diagnosed with mono and so on, is almost identical to my experience. I too will have the image of my daughter laying there with more tubes than Ive EVER seen anyone connected to in my entire life.. you're not alone Casey..Im in the same space that you are in. Take care, dear. -Peter
  18. Karisa Wallace February 19, 11:10
    Thank you for this article. I am so very sorry for your losses. I think your boys would be so proud to see the work you are doing in their memories. We lost my step-son on June 20, 2008. He was only 16. We had never heard of HLH (nor had the doctors at the children's hospital in Atlanta). He was initially diagnosed with the flu on Friday June 13 at his pediatricians after having been sick and vomiting for a few days. When he was still not able to keep any fluids down, he was taken to the ER on June 15 to get an iv for dehydration and was rushed to the children's hospital by ambulance and was immediately placed in the PICU when they determined his kidneys were failing. He was placed into an induced coma for his comfort on June 16, still undiagnosed. They mentioned HLH as a possibility on June 17 along with lukemia. His other organs also were found to be failing. He was life flighted to the children's hospital in Birmingham, AL on June 18 to be placed on an ECMO machine there and chemo was started. On the morning of June 20, he passed away basically drowning from the fluid in his lungs that they were unable to remove because he would have bled to death. He had to have an autopsy to confirm the cause of death, which took about 3 months. Once his HLH was confirmed and they found the source of the gene defect, his younger sister was tested and was found to have the same defect. They have not been able to tell us if she has HLH actively or is just a carrier and we have lived in constant fear for her the past 5 1/2 years. This disorder is so horrible and we cannot believe there is no funding for research. God bless your family and thank you for your efforts to raise awareness and funding. Again, I am so sorry for your family, and all the families that have lost someone to this terrible disorder. Anyone that has not experienced child loss cannot comprehend the depth of the pain
  19. Yolanda Saldana February 20, 22:25
    I am so sorry for your loss , I have a 16 year old daughter she also started with a fever and back pain she was in the hospital the month of july2013 luckily a dr saw signs of HLH and they tested her and it came back positive they checked if it was genetic and it's not its viral she's been on medication ever since taken predizone , kinerate, cyclosporine it's taken a till in her last week she got a slight fever and she was red in her skin I emailed the dr and took her in they did a blood test and her blood levels are going back up I am so scared I don't know what to do it's coming back ?? If anyone has information please help me
    • Kate Setter
      Kate Setter February 21, 10:59
      Hi Yolanda - Please contact our HLH Center of Excellence, you can email questions directly to The team will be happy to help you.
  20. Wioletta March 19, 05:34
    My name is Violetta, I have a daughter who is 4 years old and 18 months of fighting with HLH. Three months ago our daughter Maja underwent bone marrow stem cell transplantation from unrelated donors 9/10. Currently Maja feels good, but I'm very afraid of August or the disease does not return. I am here alone with this disease, do not know anyone who is struggling with this. People think that this illness is like any other, in Poland, the disease is not known. I would love to meet other parents of sick children to HLH to exchange views and to just talk ... From 2012, I run a blog about my daughter, I invite you to contact us. I really felt sorry to read that the two boys are dead, it's so cruel: ( Tula strongly Violetta. The address of my blog: E-mail
  21. jessica wright August 18, 22:12
    I had hlh as a child, had my bone marrow done at cch. Thank goodness for dr Filopovich. I now have two daughters of my own. And almost died from giving birth because of the after affects of the disease. This is a foundation that everyone should sponsor. I am so proud of this family, and want to say keep strong
  22. latonya September 07, 11:24
    Good information...I scanned over several stories regarding parents who have children battling with HLH. Well my story is the opposite... I'm a mother with three boys(12,8,1) I was diagnosed with HLH on 2-2-14. I'm currently in remission and I pray that I stay that way. I finished my last treatment in April.
    • latonya September 07, 11:31
      I also had flu like symptoms and went to dr. And basically was told I was going to have to let it take its course. Well after three days I knew something wasn't right and went to the ER on superbowl sunday 2014 and admitted into ICU. If I would have listen to the dr.. I wouldn't be here. I was in ICU for week while they tried to figure out what was wrong. After a series of specialists and week later I was diagnosed with HLH. I spent a totally of two weeks in the hospital and not being able to see my three boys who were 6mths, 8, 11. It was and still a rough journey for me but blessed for each day I have to cherish with my boys
  23. Ghazala September 16, 05:49
    Thank you for sharing your story i don't feel like i'm the only one going through this i lost my baby on 25/8/2014 she was just 13 days old when she was taken to hospital with a fever doctors thought she had an infection after doing blood tests they said her hemoglobin levels were very low her blood was not clotting ,her liver and spleen were swollen she was deteriorating and they couldn't figure out what was wrong with her they said she wasn't going to make it through the night but she did and the next day she was diagnosed with HLH id never even heard of it she was started on chemo and all kinds of medication , tubes and lines were in every part of her body she was put on dialysis she had blood transfusions, platelets, plasma Id never even heard of these things before .by now she had swollen so much i could barely recognize her 13 days later she got an infection 4 days later my baby's heart stopped and she left us its the most heart-wrenching thing i have ever been through I wish i could have done something to save her all i wanted was to hold her comfort her but that never happened . Im in the UK and there is not much information out here Or awareness all the information is from the US i want to know what are the chances of my future babies or the older kids i have having this horrific illness because from what iv read it might be FHLH because of her age if anybody knows of where i can get info in the UK please .you are all in my prayers. I pray god takes this pain away .
    • Kate Setter
      Kate Setter September 17, 15:24
      Hello Ghazala - To answer your question about genetics, geneticists are able to provide testing for HLH genes in other family members. If you would like to know more about that testing or have other questions, feel free to contact our HLH Center of Excellence at
  24. Misty September 24, 08:55
    I'm so sorry for all of your losses. These stories are inspiring & terrifying equally. My 3 month old niece was recently diagnosed with familial hlh. She was life lighted to Pittsburgh Childrens Hospital. Her liver had failed. She received multiple blood transfusions, plasma transfusions, the list goes on. They tested her for so many things and nothing was seeming to help. Then they started a steroid treatment and she started to improve. She responded well enough to be released from the hospital and her liver is fully functioning now. Yesterday was her follow up appointment with the doctors and we received the official diagnosis of hlh. She currently is not on any treatment for it and the doctors did not schedule appointment for continued treatment but did tell us that could deteriorate quickly at any time. She is stable still currently but it may just be her little body still responding to the amount of steroid from her hospitalization. My mom and my sister are beside themselves with the diagnosis and are frozen in fear, but I feel like we should be moving to action now that we have a diagnosis. Something to keep her stable before she deteriorates. Any advice is welcome, please.
    • Kate Setter
      Kate Setter September 24, 15:50
      Hi Misty - Please let your sister know that she can call or email our HLH team with questions at any time. The email is and the phone number is 877-920-3590.
  25. karla October 17, 21:40
    We just found out our Charlotte, my niece's daughter has HLH. I live in San Diego and Charlotte who is 6 is being treated in Portland, ME at the Barbara Bush Children's Hospital. Does anyone know if this hospital has experience with HLH? Please let us know.
    • Rachel Camper
      Rachel Camper October 24, 12:08
      Hi Karla, If they haven't already, someone from the HLH Center of Excellence will be following up with you. Or feel free to reach out to them directly at 877-920-3590 or or
  26. Iringtie October 24, 11:05
    Your stories are so heartbreaking. I am a father whose son 7 yrs is going through pains for more than two years. Right now he is serious and doctors told us to prepare for further treatment after initial treatment of steroid and chemo. But my family has exhausted our resources and wondering? But being a christian, and pastor of the Church. we relay everything to our loving God who can still perform miracle upon my son. Encouraged after going through your pains with courage. October 24, 2014 (Kohima, Nagaland, North East India)
  27. Iringtie November 11, 02:43
    Dear Khristin, Last month 24th October I went through and was encouraged that my family is not alone in fighting this rare and merciless disease. By the time I wrote in your blog, we were fully relay on God with a firm faith that God will heal our son Ikoklung Kuaring 7yrs and a months. However, after two days I wrote, my son was called home by our heavenly Father to be with him on 26th October 2014. Pain, empty in our hearts, missing him every now and then. The only source of strength that comes to us is " we are meeting him one day" with pains and sorrows. Iringtie, Nagaland, North East India
  28. Kirsty Brennan December 05, 05:40
    my daughter. Is 4 tomorrow a month after her first birthday she picked up maningocockle septicaemia spent 2 week in Alderney ICU things look good for 2 days n she had high fevers stop filing none responding skin started going red blustery back to ICU dignosed with secondry hlh it was that aggressive they said she was more likely to service with the Cemo n steroids n immunoglobulins n side affects of them than with out treatment at all she af got brain damage throw the hlh 12 month in Alderney hospital oncology she as bin off treatment nearly 2 years nA n fingers crossed she keeps recovering from brain damage she's add learn to walk eat talk but she's still heear as strong as ever but sorry to all who this desesA
  29. swati jain December 09, 11:05
    I feel sorry for you,but you have brave heart.I have lost my son VEDANT with hlh on 18th march 2013 who was 7yr 9mnths old.He was very lovable ,brilliant child and I miss him everytime.I have daughter she is now 7yr old.she is getting ill frequently i want to know which test to be done on her ,so i will be fear free from this deadly disease.please help me.i am living in India.
    • Kate Setter
      Kate Setter December 09, 13:51
      Hello Swati - Please email our HLH Center of Excellence with your questions about testing for your daughter. A member of the HLH team will get back to you with more information. Thank you.
  30. Alyssa January 08, 09:14
    I had my 16 year old cousin die from HLH in 2013. It's really hard to move on from it.
  31. Hilda P. January 11, 13:39
    My nephew was just diagnosed with HLH yesterday after being in the hospital since Dec. 23,20014.....He's starting Chemo today and we are praying that his body reacts to it and hopefully he get's better soon! Is there any other tests that the Dr's can do or any medicines that he can get??? Anyone have any suggestion's please???
    • Rachel Camper
      Rachel Camper January 12, 09:06
      Hi Hilda, I recommend that your nephew's family reach out to our HLH Center of Excellence directly at 877-920-3590 or
  32. Sunit January 15, 05:41
    Hi, We lost our 15 months lovely son due to HLH. Docs are still trying to figure out whether it was genetic or not. They are not sure whether they will be able to figure out if it was genetic. Just wanted to check, if they cant figure out shall we go for second child. Are there any gene screening which can be done before trying for second child
    • Rachel Camper
      Rachel Camper January 15, 08:25
      Hi Sunit, Please reach out to our HLH Center of Excellence directly to see how they may be able to assist you. Phone: 877-920-3590 Email:
  33. I am so deeply sorry for the loss of your Angels. I was just notified that my 15 yr old Nephew Lawrence is very sick and has been that way for almost two weeks. The doctors just told my family that they think it could be HLH but they still aren't sure. I want to thank you for sharing your story and gives me hope that my Nephew can some day, if God willing, will let him grow up and play ball! Again I am so sorry for your loss. May God Bless you and your Family today and everyday! SSG Barela, Amy
  34. Nohemi April 29, 16:58
    I am sorry about your losses my daughter is 4 yrs she is diagnosed with HLH since she was 5 months she started with fever it was one of my worst day of my life when the doctor told me that my daughter was diagnosed with HLH I felt like was dying. .but we still bAttle and fighting with that diseases. ....and I take God that we still are Little Naydine with us..and we still gonna continue fighting with HLH god bless each one of u
  35. Lucy Gonzalez May 27, 22:06
    My niece, that happens to be a twin was diagnosed on 5/22/15. She's fighting for her life as i type. This situation is complicated, as far as her mother and father (my brother). But her aunts (i have 3 other sisters) are advocating for her. My nephew is fine at the moment, but we are in the mist of getting all the tests done that he needs so that he doesn't go through this as well. We live in Phoenix, AZ and my niece is under the care of the Children's hospital here. Please pray, send good vibes, thoughts, mojo ANYTHING that my little niece pulls through. Her brother/wombmate misses her.
  36. Beth Asraf June 03, 00:26
    My son Tomier 14 yrs old was diagnosed with HLH on April 20, 2015. He had on and off fevers from January 2015 thru April 2015. Severe loss of appetite resulting in weight loss. No energy to do anything, more extreme than the average teenager. We started noticing strange big bruising on his arms and legs. And then finally he turned yellow, jaundice. During that 4 month time frame we saw a neurologist, a heart specialist, a nutritionist, a psychologist, and then when he came home from school really yellow we went directly to our general practitioner. Tomier's urine was the color of cola, our doc/nurse practitioner took blood and expected results by noon the next day. 12:05 April 14th 2015 we got a call to go directly to the ER and to give them these blood numbers. By the time we got to the Summerlin hospital, Tomier had petechia all over his legs and stomach. His white cell blood count and platelets was almost non existent. He was admitted and the doctors and nurses began working. Lots of transfusions and really great care takers and six days later we have a diagnosis and we begin chemo and steroids. We are just waiting for a date to see the team in Cincinnati to find out how to proceed. Tomier's HLH is not genetic. This disease is extremely scary. Lots of prayers to all touched by this disease. Prayers and positivity.
  37. Alicia's ??? June 04, 12:49
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  38. saroj gautam June 30, 09:36
    i suffered from the fever for more than 15days.Doctor told me that i was suffering from typhoid and they were treating me with the the medicine of typhoid.But i didnt get well.So they took blood sample from my bone marrow.After some days they told my parents i was suffering from hlh and the treatment was not available in this country .So me my father and my uncle went to the delhi for the treatment.THE treatment was very much severe.I had to go through chemotherapy.Which was very painful.After ten months of treatment i was finally cured from this disease.Now i have been studying.I hope better for those who are suffering from this deisease.Dont give up and stay calm.You will definitely be fine .
  39. Nhierel July 05, 02:45
    My 6months going to7months daughter was suffering of HLH. Im from philippine and we're now in korea for her medications she finished chemo therapy for 1 month and we're going to undergo bmt. Hope she will be fine after that.her doktor said nothing to worry she will be alright.but How I could worrying of this diseases she has a babies.praying for my baby hope she will be fine soon..
  40. Susan mohammed July 07, 14:58
    Hi my son had a hard time with this disease he stayed in the hospital for 1 year develop about 6-7diffrent infection an my 17 year old daughter I scared for her because she can get sick like my son anytime be strong an pray God is good an every thing will be ok
  41. Safaa October 03, 10:59
    Sorry about your loss, your sons would be so proud that your directing all your greif into positive thing. I losed my dad to HLH last year and never really knew about the disease until he was diagnosed, within 2 months he losed his life. I pray for all of you that you get better and that we can find an effective cure to the disease.
  42. I would like to thank you for posting this wonderful video and the information on HLH. My great nephew is 865+ days post transplant and growing and living just like he should be. This was an inspiration to me to be able to know that others have went through the same things my niece and her family have.
  43. This was an incredible article bringing me more knowledge of my great nephews disease. He is 865+ days post transplant and growing and living and learning. I am truly sorry for your loss and appreciate your sharing your story and the video. Sincerely, Cheri Carr
  44. Bhagwansing jadhav October 27, 14:16
    Hi all i am a 30 year old newly married before 3 year i have 18 month older baby. Now i come to know that she is affected by HLH disease i really dont understand anything because i from poor family. Please help me further treatments.
    • Rachel Camper
      Rachel Camper December 10, 09:30
      Hi Bhagwansing jadhav, Please contact our HLH Center of Excellence to see how they may be able to assist you:
  45. Sai November 13, 20:20
    We lost our 2 yr 6 month old nephew for suspected HLH. No diagnosis to confirm if it is HLH. It is very heart breaking to lose a kid. I appreciate your resilience to bounce back and help other HLH patients. Unfortunately we don't have proper diagnosis for this in India. I am also looking for supporting HLH diagnosed children in some way.
  46. Tyla Hackett November 19, 00:24
    Hey thank you so much for sharing your story with the rest of us! I understand if you dont want to but I was wondering if you would be able to share with me what it was like personally having to go through this. I am currently trying to raise awareness for this heartbreaking disease and I though instead of going for the science in it I thought I could use the peoples views and the way they dealt with it. So if you have any information of any sort on this subject please let me know. All my wishes go out to you and your family. Tyla Hackett <3
    • Kate Setter
      Kate Setter November 24, 10:58
      Hello Tyla - if you'd like to reach Kristin directly, the best way to do so is via their foundation. You can find contact information at
  47. Nadia Davidson January 01, 22:59
    My best friend daughter and my god baby is going through this right not she is in uab in Birmingham alabama keep her in yall prayers thanks
    • Vidyasagar January 11, 14:06
      I am lost my 56 Days Son .reason for HLH , Please help me my wife next pregnency safe palnning . sent from visakhapatnam , INDIA. Regards, vidyasagar.
      • Rachel Camper
        Rachel Camper January 12, 10:13
        Hi Vidyasagar, Please contact our HLH Center of Excellence to see how they might be able to assist you. or 877-920-3590.
  48. Dawn February 20, 22:37
    Iam so sorry for your loss of your two sons my friend just died from that hlh on Tuesday she was in her 50 I have never heard of that hlh til my friend Karen carr died from that. On Tuesday February 16 th 2016.
  49. Megan April 24, 06:08
    Hello, My boyfriend was diagnosed with stage 4 lymphoma back in November 2015. Needless to say has been a trooper and beyond brave. He is always ready to stand up and fight, no matter what. We were just told yesterday that there is nothing else the docotrs can do for him. But what I'm getting at is that Nick too has HLH a secondary disease from the lymphoma. He too has low counts, fevers if he doesn't take his steroids. This is a very serious issue,and injuat have no clue anymore as to how to go about it. This could kill him quicker than the lymphoma. HELP!! Just point me in the right direction. I can't give up,hes only 27. ????????????
    • Rachel Camper
      Rachel Camper April 25, 08:19
      Hi Megan, Please have him reach out to our HLH Center of Excellence. or 877-920-3590
  50. Sarai April 26, 15:17
    First of all I'm so sorry for your loss. I don't know how to write this or how to start my daughter passed away 1/31/2016 she was diagnosed with secondary HLH it happen to fast I don't accept it I feel like I got a piece of me taken away. I don't know how to continue she was fine one day and next she is gone. Her birthday is coming up as well as her kinder promotion in May i just don't know what to do it seems like its getting harder.