Help with Hemophagocytic Lympho Histiocytosis
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Video: From Happy to Hospital
Carson Goring earned a merit scholarship to Interlochen School of the Arts . I stayed nearby, working, and was excited to pick her up halfway though for the weekend. However, I could not believe what a sick child I met: Limp, with haunted eyes, swollen glands, a 104 degree fever, a failing liver, and Ebstein Barr Virus.
(Carson on her way to camp, about a month prior to getting sick.)
After 2 weeks of erratic diagnosis, and 4 hospitals later, Carson was diagnosed with HLH, a life threatening disease that was triggered by the the Epstein Barr.
We came back to LA to the most hostile care imaginable: More misdiagnosis, treatments she didn't need, chemo, and dexamethasone which triggered Dexamethasone psychosis. Along with other prescription overdoses, Carson suffered memory loss, and cognitive function. This brilliant kid who scored 93 % percentile on her SSATS could not longer figure out how to brush her teeth. The uncaring, dismissive, and degrading hospital staff have furthered created enough trauma for any 15 year old who is missing out on her Sophomore year.
(Carson getting her bone marrow biopsy and spinal tap. 3 days later she nearly died. )
Worse, as a single mom, I lost my summer contracts and now haven't worked in 4 months, going on to 5 months. So I have no income.
No problem, surely there are resources for people like us! Alas, no. We were TURNED AWAY by:Ronald Mcdonald House , DPSS, SSI, LAFH , St.Jospehs , and even....211 amongst many other charities and homeless organizations I called. I have actually been told to "stop calling"...as if ignoring me will make the problem go away.
(Carsons' arms from the constant blood draws. )
NOW: Carson has a lot of scarring now...both external and internal. Osteoporosis Post Traumatic Stress, and a body she does not recognize
"All forms of HLH, including cases treated adequately, may have a high mortality rate. The long-term outlook( prognosis ) of familial forms without treatment is poor, with a median survival of less than 2 months to 6 months after diagnosis. Even with treatment, only 21-26% are expected to survive 5 years."
Carson Goring earned a merit scholarship to Interlochen School of the Arts . I stayed nearby, working, and was excited to pick her up halfway though for the weekend. However, I could not believe what a sick child I met: Limp, with haunted eyes, swollen glands, a 104 degree fever, a failing liver, and Ebstein Barr Virus.
(Carson on her way to camp, about a month prior to getting sick.)After 2 weeks of erratic diagnosis, and 4 hospitals later, Carson was diagnosed with HLH, a life threatening disease that was triggered by the the Epstein Barr.
We came back to LA to the most hostile care imaginable: More misdiagnosis, treatments she didn't need, chemo, and dexamethasone which triggered Dexamethasone psychosis. Along with other prescription overdoses, Carson suffered memory loss, and cognitive function. This brilliant kid who scored 93 % percentile on her SSATS could not longer figure out how to brush her teeth. The uncaring, dismissive, and degrading hospital staff have furthered created enough trauma for any 15 year old who is missing out on her Sophomore year.
(Carson getting her bone marrow biopsy and spinal tap. 3 days later she nearly died. )Worse, as a single mom, I lost my summer contracts and now haven't worked in 4 months, going on to 5 months. So I have no income.
No problem, surely there are resources for people like us! Alas, no. We were TURNED AWAY by:Ronald Mcdonald House , DPSS, SSI, LAFH , St.Jospehs , and even....211 amongst many other charities and homeless organizations I called. I have actually been told to "stop calling"...as if ignoring me will make the problem go away.
(Carsons' arms from the constant blood draws. )
NOW: Carson has a lot of scarring now...both external and internal. Osteoporosis Post Traumatic Stress, and a body she does not recognize
"All forms of HLH, including cases treated adequately, may have a high mortality rate. The long-term outlook( prognosis ) of familial forms without treatment is poor, with a median survival of less than 2 months to 6 months after diagnosis. Even with treatment, only 21-26% are expected to survive 5 years."
Organizer
Victoria Goring
Organizer
Burbank, CA
