Jul, 13
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 Marrow.org, become regular blood donors and realize that with love, anything and everything is possible.


  1. 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!

    Karen - July 21, 2013 at 3:37 pm Reply
  2. 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

    Elida Batista - July 23, 2013 at 2:57 am Reply

    Geoff Butler - July 23, 2013 at 7:17 am Reply
  4. 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.

    Niccole Justiz - August 8, 2013 at 12:16 am Reply
  5. 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 reoccurance 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.

    Sheryl Crawford - August 8, 2013 at 12:19 am Reply
  6. Thanks for sharing! What a powerful story.

    Cindy - August 19, 2013 at 12:56 pm Reply
  7. 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 ) !!!!

    b. long - August 31, 2013 at 2:54 pm Reply
  8. 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 inibate 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 steriods 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 everyones 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.

    Melanie Dembowski - September 1, 2013 at 6:27 pm Reply
    1. Hi Melanie
      I’ve just read your story and have been wondering whether your older child also has HLH. I sincerely hope not. XXX

      Tracey - March 28, 2015 at 3:22 pm Reply
  9. 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.

    Erin - September 11, 2013 at 9:08 pm Reply
  10. 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 fever.my son and my daughter Are sick .i need a micracle . Or super power .help?

    Shafied Mohammed - September 27, 2013 at 4:57 pm Reply
    1. Shafied, can you tell us where you are from? That will help us determine how to point you in the right direction.

      Kate Setter - October 3, 2013 at 1:29 pm Reply
  11. 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.

    Jan Turner - October 1, 2013 at 5:36 pm Reply
  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. 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.

    Casey - December 31, 2013 at 3:24 am Reply
  15. 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.

    Tammy - January 2, 2014 at 5:31 pm Reply
  16. 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

    Patrice C. Lekas - January 10, 2014 at 4:01 am Reply
  17. 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.. youre not alone Casey..Im in the same space that you are in. Take care, dear. -Peter

    Peter J. Lekas - January 11, 2014 at 12:11 am Reply
  18. 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

    Karisa Wallace - February 19, 2014 at 11:10 am Reply
  19. 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

    Yolanda Saldana - February 20, 2014 at 10:25 pm Reply
    1. Hi Yolanda – Please contact our HLH Center of Excellence, you can email questions directly to HLH@cchmc.org. The team will be happy to help you.

      Kate Setter - February 21, 2014 at 10:59 am Reply
  20. 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 wiolettagajda@o2.pl

    Wioletta - March 19, 2014 at 5:34 am Reply
  21. 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 eveyone should sponser. I am so proud of this family, and want to say keep strong

    jessica wright - August 18, 2014 at 10:12 pm Reply
  22. 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 7, 2014 at 11:24 am Reply
    1. 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

      latonya - September 7, 2014 at 11:31 am Reply
  23. Thank you for sharing your story i dont feel like im 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 couldnt figure out what was wrong with her they said she wasnt 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 cemo and all kinds of medication , tubes and lines were in every part of her body she was put on dialysis she had blood transfusions ,platlets ,plasmas Id never even heard of these things before .by now she had swollen so much i could barely recognise her 13 days later she got an infection 4 days later my babys heart stopped and she left us its the most heartwrenching 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 happend . Im in the UK and there is not much information out here Or awarness 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 .

    Ghazala - September 16, 2014 at 5:49 am Reply
    1. 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 hlh@cchmc.org.

      Kate Setter - September 17, 2014 at 3:24 pm Reply
  24. 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.

    Misty - September 24, 2014 at 8:55 am Reply
    1. Hi Misty – Please let your sister know that she can call or email our HLH team with questions at any time. The email is hlh@cchmc.org and the phone number is 877-920-3590.

      Kate Setter - September 24, 2014 at 3:50 pm Reply
  25. 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.

    karla - October 17, 2014 at 9:40 pm Reply
    1. 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 HLH@cchmc.org.

      Rachel Camper - October 24, 2014 at 12:08 pm Reply
  26. 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)

    Iringtie - October 24, 2014 at 11:05 am Reply
  27. 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

    Iringtie - November 11, 2014 at 2:43 am Reply
  28. 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 treament 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

    Kirsty Brennan - December 5, 2014 at 5:40 am Reply
  29. 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.

    swati jain - December 9, 2014 at 11:05 am Reply
    1. 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.

      Kate Setter - December 9, 2014 at 1:51 pm Reply
  30. I had my 16 year old cousin die from HLH in 2013. It’s really hard to move on from it.

    Alyssa - January 8, 2015 at 9:14 am Reply
  31. 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???

    Hilda P. - January 11, 2015 at 1:39 pm Reply
    1. Hi Hilda, I recommend that your nephew’s family reach out to our HLH Center of Excellence directly at 877-920-3590
      or HLH@cchmc.org.

      Rachel Camper - January 12, 2015 at 9:06 am Reply
  32. 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

    Sunit - January 15, 2015 at 5:41 am Reply
    1. 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: HLH@cchmc.org

      Rachel Camper - January 15, 2015 at 8:25 am Reply
  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

    SSG Barela, Amy US Army Engineer - February 8, 2015 at 6:40 pm Reply

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