Help after Loss of Child with Down Syndrome to HLH

We brought Kerry to the doctor, after he was complaining about his tummy. He was advocating for himself. Oddly, when asked if he wanted to go to the Urgent Care or ER, he said ER. He came down the stairs, dressed himself and made a beeline for the car. We got to the ER 6 hours before things started getting intense. Kerry was still high fiving the EMTs in the ER and showed the doctor his Tummy and guided the doctor’s hand to where it hurt him and said Tummy when the doc didn’t know yet what was going wrong. . Nothing could have prepared anyone for what happened next. What started as an intestinal perforation and subsequent emergency surgery, but successful-

Then, was a deep dive into a medical gauntlet. Grappling with one emergency after another, always starting w/ crazy high fevers, a revolving door, of ERs. Finally, the doctors at Eden, w/in 24 hours of admitting our wonderful Mr. Kerry, suspected and confirmed HLH, Hemophagocytic Lymphohistiocytosis.

Kerry was transferred to Stanford Palo Alto, a premier center for HLH treatment.

Kerry is a true fighter and a hero, he was looking robust and his organs in great shape, when he got to Stanford. He immediately responded to their treatments that could only be administered at Stanford. However, he ran out of precious time.

Their entire families fought hard for Kerry. Miss Kelly, Chelle, Yellers, Tim Tim, Manda, Michael and Ochweenie , fought with everything they had. Including taking leave from work, taking weeks off work, emergency flights up from Los Angeles, multiple times and much more!

Kerry’s mom injured herself and lost her job w/ no unemployment even. And, she wasn’t the only one!

Any donation or kind words for Kerry and his family would greatly help and guide them through utter devastation. They need to be able to grieve without collapsing under mounting medical bills, mortuary costs and more.

About Kerry



When Kerry was born he surprised us all with Down Syndrome and a congenital heart defect. He had open heart surgery at 10 months but you wouldn’t know how much he had been through if you met him. It’s hard to put Kerry into words because no words can really do him justice. He was the embodiment of Love itself and an endless supply of laughter and silliness. He loved Tik Tok just as much as any other twenty something year old and loved to sing with his two older sisters. He loved FaceTime and practicing his Australian. He could make even the most grinch-like person smile and warm the coldest of hearts. He did not judge and saw the good in everyone. He was wonderful and knew it too. He knew the care he was due, and his family cared for him more than they thought possible. His mission in life was to teach others in his own special way. He will always live on in all our actions, because he taught us to be kind and sincere. We miss him terribly but find ourselves so grateful for all the smiles, laughter and happiness he gave us.

Thank you so much for reading about our beloved Kerry and all your support ❤️