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Expenses for Surgery and post op rehabilitation
Donation protected
This is Tinyla she is 10 years old, at the age of 6 she started having seizures 3 years multiple tests and hospitalizations later she was diagnosed with a rare disease called Rasmussen encephalitis,
Rasmussen’s encephalitis (RE) is a very rare, chronic inflammatory neurological disease that usually affects only one hemisphere (half) of the brain. It most often occurs in children under the age of 10 but can also affect adolescents and adults. It has features of an autoimmune disease in which immune system cells enter the brain and cause damage. RE is characterized by frequent and severe seizures, progressive loss of neurological functions including motor skills, speech, and eventual paralysis on one side of the body (hemiparesis), inflammation of the brain (encephalitis), and mental deterioration. Children with RE frequently enter a phase of permanent, but stable, neurological deficits after 8 to 12 months; the disease in adults and adolescents may continue to progress slowly. The prognosis for individuals with Rasmussen’s encephalitis varies. Despite the advances in medical treatment, none has yet been shown to halt the progress of the disease in the long term. The disorder may lead to severe neurological deficits or it may cause only milder impairments. For some children, surgery -- particularly hemispherectomy or hemispherotomy -- may halt disease progression and stabilize seizures. However, most individuals with Rasmussen’s encephalitis are left with some paralysis, cognitive deficits, and problems with speech. In some very rare cases, the disease can progress to involve the opposite brain hemisphere. In December of 2020 Tinyla underwent surgery to remove 3 portions of the left side of her brain to try to stabilize her seizures and halt the progression of her disease, Sadly the disease continued to progress and she had to do weekly 2 hour steroid infusions and monthly 7-8 hour IVIG or rutuxin infusions since surgery. Unfortunately once again she has to undergo another Surgery in less than 30 days to remove the entire left side of her brain, and extensive inpatient physical therapy outside of the state. I am a disabled single mom, the last surgery left us with a co-pay of $14,000 and current financial strain to maintain basic needs. Everything helps even if it's just $1 and prayers are definitely needed
If you would like to help an anyway please donate. You contact us by sending a message on her fb page, All 4Love/Tinyla's Titans Cashapp $pnthrsheart
Organizer
Sonia Kitchen
Organizer
Saraland, AL