Hey everyone, my name is Kirsten and I am looking to raise funds for my youngest brother, Khai. In February of 2016, he was hospitalized at Duke for two weeks due to a variety of symptoms, some of which included falling, losing consciousness, easily losing balance, loss of vision, and changes in personality. They ended up finding significant swelling throughout his brain and had to do a biopsy to find the cause. While they waited for the results to come back, they prepared us for end-of-life circumstances and offered to bring in a bishop to pray with us. We were devastated and could barely eat, sleep, or function knowing we could wake up any day and he would be gone. Thankfully, the neurologist, doctors, and nurses saved his life and finally came up with a diagnosis. He was diagnosed with Schilder's Disease, which is an extremely rare form of multiple sclerosis. They had to treat him with steroids and chemotherapy via infusions once every 6 months. They stopped both temporarily and the swelling came back, causing him to mumble incoherently and have a hard time writing. He had to drop out of school and went from being a straight-A student to not even being able to draw a picture of a clock or write his name.

The swelling coming back helped the doctors conclude that he would need chemotherapy infusions every 6 months for the rest of his life. Unfortunately, this condition is lifelong and has left him with several impairments. He lost his left peripheral vision in both eyes permanently, cannot follow multi-step commands, is extremely sensitive to heat (he gets overheated very quickly and turns pale/risks fainting), developed severe anxiety (hardly leaves the house), is exhausted frequently and has to nap, easily loses his balance, etc.

This backstory is necessary to understand the severity of his condition and how much his health is dependent upon his medication, MRIs, and follow-up appointments with his neurologist.

That being said, he is and never will be able to take care of himself on his own, will never drive a car, and could never hold a job. Although he is still very intelligent, he struggles with the simplest tasks and will need to live with a working adult for the remainder of his life. He is, in more ways than one, permanently disabled and incapable of caring for himself.

Our mother assisted him in applying for disability in 2020 and he has been repeatedly denied the request for assistance. She filed multiple appeals herself to no avail and in 2023 she contacted a disability lawyer who has been helping her with fighting them for assistance ever since.

Today she received a letter stating his Medicaid is being discontinued immediately due to not being approved for disability. This insurance is the ONLY way my family and I can afford his infusions, MRIs, and neurology appointments. The life expectancy of someone after being diagnosed with Schilder's WITHOUT treatment is only TEN years… he was diagnosed in 2016 and with the help of these treatments his condition has remained the same instead of worsening. Without them, we may lose this person whom we have loved, laughed with, cried with, and experienced so many important milestones with. Not only is he family, he is a wonderful person.

We are asking if anyone will kindly donate any amount to this fund to help with treatments until we can get him approved for disability. This disease is so rare and his swelling is covering so much of his brain that they even published his case and it’s a miracle he has been with us this long. Please help us keep him here longer. Any donation will be greatly appreciated and help tremendously. Please share this and pray for him if you are unable to donate. Anything helps.

these funds will be applied to the cost of his infusions, toward MRIs, and toward neurology appointments or anything else medical that may come up.