Haiden & HLH

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Haiden has been an immune suppress child all his life. Born 9 weeks early, at 9 months diagnosed with ITP and at 1 and a half diagnosed with Nephrotic Syndrome. In January 2014 his younger sister was born a perfectly healthy, on time baby. Reached all her milestones on time until July 2014.

haidenLailah had had a virus, temps and a throat infection for about 4 weeks. I kept taking her to doctors knowing something wasn’t right but no one picked up anything abnormal. We were at a shopping centre car park when she had a seizure in my arms. I took her straight to the local hospital were they just observed her. They were about to send us home when she had another seizure that lasted 20 minutes even after 2 lots of medaz. She required oxygen after that and the next day was transferred to the RBCH because of low blood counts and Haidens history. That night she was diagnosed with HLH. She had chemo treatment however it was too late. 3 weeks later she passed at 7 months old. Since then we have all had countless tests and it has been confirmed that this is genetic and that our son has the same mutant genes as our daughter.

On 1 January he started the intensive treatment of a bone marrow transplant to cure him. In the time of his transplant he had a major pulmonary bleed and the doctors weren’t sure if he would make it. Fast forward to today, he is still recovering but out of hospital and staying in an apartment close to the hospital. We should be able to go home at day 100 which is 55 days away. We still don’t know if this has been successful yet but should find out in the next month or so…

HLH is very rare and is a quick killer! Please share to raise awareness.

1 Comment
  1. On Christmas of 2014, our friend Christopher was 26 yrs. old and healthy as a horse. In Jan. he had a fever and felt achy, like having the flu. Within 3 weeks he could barely stand and this time his mother would not leave the emergency room without an answer. The tests showed that he had HLH and stage IV bone marrow cancer!! On June 10th, Christopher had a bone marrow transplant from his brother. The ulcers in his mouth were very sore and yes, he is still tired and nauseous but his blood counts are slowly going up. We are all praying that he will be allowed to come home after 100 days from his transplant day. Yes, HLH is a sudden, very aggressive and rare disease and it takes families by complete surprise. I am sorry for your lose and for having to experience this emotional roller coaster before then. May we still be alive when they find a cure for HLH. Amen.
    Shirley