Donate to Leilani's Fight Against Moyamoya Disease

My name is Leilani Bugayong Jovero-Holmes, 59 years old diagnosed of "Moyamoya" disease last July 25, 2024. It is a rare, chronic progressive disease in which certain arteries in the brain are constricted. Blood flow is blocked by constriction and blood clots. On conventional angiography, these collateral vessels have the apperance of a "puff of smoke",described as "Moyamoya" in Japanese. It was first identified in Japan where it most prevalent affecting about 5 in 100,000 individuals. In the US, the risk of developing Moyamoya is less than one in 100,000.

It all started when my husband, Andy took me to ER- with 220BP on July 22! Throbbing headaches, nausaeted and dizziness! ER did a CT Scan then recommended I will be admitted to the hospital. They performed different tests such as Head CT Scan agin , then MRI, then Neck & Head CT Scan ..for 4 days admitted in the hospital, my BP would not go below 190, throbbing headaches and nausea....then finally they did cerebral angiogram. I was so surprised how rare is this disease that it could results to a stroke! This created anxiety and depression on the part of my husband as well as mine because we were not ready about this unforeseen change events of our life. Unfortunately as self-employed, we don't have money for medical and hospital bills and the sad thing-the supplier company of our direct selling merchandise doesn't even render any help monetarily-instead they are pressuring us to sell more products for them while I am in a dire medical condition after being discharged from the hospital!

Moyamoya is on my right brain which resulted to chronic Paresthesia on my left upper extremity -numbness, tingling, pain, clumsiness and electric shock feeling on my shoulder that radiates down to my arm and hands which prevent me from working.I applied for Social Security disability and income, but denied despite of working in the US since 1990 legally as a US Citizen and paid taxes... I applied for Medicaid with disability and food stamps, the food stamps was approved-$221/mo, but the Medicaid was denied... I am needing to be checked up monthly with the neurologist with MRI to check the progress and development to avoid stroke, but I don't have $300 to see the neurologist and self-pay the MRI which I am already due since August. Unfortunately, I was informed by the neuro office that they don't accept Medicaid for any neuro services. They only accept major insurance. This is so sad that having no insurance is depressing, not accepting Medicaid by these neuro centers are even more depressing and frustrating unless I have $300 to the neurologist and pay the MRI......It seems that I am not getting any medical assistance from the State.

Currently, I am taking 9 medications such as blood thinner (Plavix) to prevent having a stroke... I am needing an assistance by a caregiver in bathing and dressing because my left arm and hands are numb and I feel dizzy while in the shower and dressing-so in this case, my husband, Andy does the role of caregiving for me by checking my daily BP -watching it closely not to go above 158 and make sure I take my daily 9 medications seriously as well as assist me with daily households and errands. Currently, we have $990 bill from Sunstar (EMS) and $1701 (ER Physician of Pinellas, FL). We are currently 2 months behind in rent-$3050 for Sept and $3050 for October. Our energy bill is $830.60 which we have a disconnection notice until 10/8/24 to pay the past due bill. On top of that-we have car insurance and registration that is due on 10/8/24.

I am under the care of my PCP, neuroradiologist and neurologist for the next 6 months by having MRI every month -to make sure the decision to have a surgery is possible or not, but because we don't have money for regular check up and medications-this adds up to my anxiety which I take Xanax to be able to sleep and relax. I beg for your donations and monetary help during this time of our distress. This disease unexpectedly created upside down in my health and our financial status. It has been painful that we needed to pawn anything to pay for our foods before we were approved for food stamps. We would appreciate it any amount you would donate in helping with my medical bills and past due utilities. May the Almighty God bless your hands and hearts. Prayerfully, He will bless you in some other ways.

Sincerely,

Leilani