HealthHi, my name is Alexa, and I have a rare disease called SCA3 (Spinocerebellar Ataxia Type 3). It affects all movement, especially voluntary functions such as speaking, walking, swallowing, seeing, and many others. It is a progressive disease. My symptoms began in 2012, and they have continued to worsen over the years.
I am originally from the United Kingdom and currently live in the United States. I moved here six years ago with my ex-husband and my daughter. Since October 2024, I have had no contact with my daughter whatsoever. There was no mediation from social services. I met the social worker responsible for her case only three times, and it took a tremendous amount of effort to make even those meetings happen. I do not know him well enough to understand why he has not done his job. As a result, I have been completely cut off from my daughter for more than a year and a half, with no way to communicate with her or know how she is doing.
Due to several traumatic events that occurred last year, which I have explained in my videos, my health has been severely affected. Before all of this, I was able to go out by myself, cook, and live an almost normal life.
Now, I need more support. My caregivers only have enough time to prepare meals and help with basic household tasks. I am currently applying for additional caregiving hours for the third time so that I can leave my home accompanied by a helper.
Last year, I became extremely debilitated. Despite everything I was going through emotionally, I also had to be hospitalized multiple times due to complications related to my disease.
I have many expenses, including medical bills, medications, nutritional supplements, rent, and household utilities. I would also like to travel to visit my family in the United Kingdom, but airfare is very expensive, and I would need a caregiver to accompany me on the trip.
I also need a life. Right now, I am only surviving. I live alone in my apartment and am completely isolated from the world—not because I choose to be. This is not loneliness; it is isolation. And isolation has a devastating impact on the brain and emotional well-being.
I need glasses because my eyesight has deteriorated significantly, and I can no longer read comfortably. I also need to purchase a computer because managing my life through a cellphone has become increasingly difficult. My hands shake due to parkinsonism, which is another symptom I deal with daily.
There is currently no cure and no effective treatment for my disease.
I have no support network in the United States. Once or twice a year, an acquaintance may come to visit. People are busy living their own lives, which is understandable. But I, too, need some form of social connection and human interaction.
Today, I am humbly asking for your support. Any donation, no matter how small, will make a meaningful difference in my life.
I will be forever grateful for your kindness and generosity.
Please help me find some relief, peace, and dignity during this difficult journey.
Thank you from the bottom of my heart.
Yours sincerely, Alexa
