Mom's Health Journey - Big Changes!

My mother was diagnosed with Central Nervous System Lupus when I was 14 and she was 39. My remaining teenage,  college years and adulthood thus far have been spent as her caretaker where I have bared witness to the painful progression of her disease and degeneration of her body. Today I am 28 and she 52.


My mom’s Lupus has attacked her entire system, causing startling effects such as daily heart arrhythmias, inflammation in her brain (cerebritis), the loss of her ability to walk independently and severe systemic neurological pain that never eases. This year alone she has been hospitalized for both seizures and TIA's (transient mini-strokes). Her most recent diagnosis includes Common Variable Immunodeficiency, making her immunoglobulin levels (the cell counts that make up her immune system) startelingly low. Due to this, she endures recurring enterobacter infections, infections that take advantage of an opportunity not normally available, such as a host with a weakened immune system. These infections often require prolonged hospitalization and are challenging to treat as they are  resistant to antibiotics - they  can be the cause of death for someone with the immune disease that my mom has and cause systemic inflammatory response syndrome. Treatment has required surgical procedures a number of times. Her doctors are desperately encouraging her to begin Intravenous Immunoglobulin Treatments (IVIG), but, due to her financial misfortune that has been the result of this medical nightmare, she is unable to begin the treatment.


As her young adult daughter and caretaker, I am trying to figure out how we can create a long term sustainable life for my mom and I. One where she can have her basic needs met so that she is able to move forward with these essential treatments and focus on her health and wellbeing. Also, one where we have enough support that I am able to be liberated from the hardship of being 28 and the sole caregiver of an ailing parent - so I can return to focusing on my career and objectives and have some a degree of relief from a circumstance that causes much angst, worry, heartbreak and financial sacrifice. 

Currently her days are spent hovering over medical, utility and credit card bills. It is impossible to rely on social security alone. In addition to being sick, financial struggles cause immense emotional distress and anxiety, as one can imagine. 




Even in recovery from being in the ICU for seizures - she' still throwing up peace signs - warrior mama!


Prior to her getting sick she was a vivacious, sociable and driven career-woman raising me with boundless love while working on her college degree and a number of entrepreneurial endeavors.  Recently, while I am busy jumping between my day job and night job, she has spent many nights on the phone with the suicide hotline. While this journey has been long and exhausting, the fact that it has become so medically, emotionally and financially critical is why I am  reaching out to you, friends, family, friends of friends and strangers, for your support.


This fundraiser will help us in a multitude of ways  including assistance with moving expenses and designing a more sustainable and supported life for her in our hometown where she can return to the support of friends and receive  IVIG treatments. My main objective is to give my mom the tools she needs to live a life of stability without the fear of being homeless or hungry, and to assist her in getting the necessary medical treatment she needs.

Despite all of this, my mom  loves to laugh, go outside and has the most sincere appreciation for life and the little things, she has a deep yearning to break her isolation and embrace community! Though she has lost a portion of her youth to illness, she has the spirit to never stop fighting and understands the value of love beyond all else.  It has been a heartbreaking road to see my mom suffer for so many years, she is the most compassionate, loving mother and it is my duty to make sure that she is more comfortable and taken care of. With sincere gratitude, humility and hope, I ask for your support. I pray that together we can give her the management tools she needs to live a happier, more sustainable life, and in effect - the emotional support our family so greatly needs during these trying times.



It took all of her might to get made up and ready for this event that was so dear to our hearts! #LupusLaOrangeBall2014


Thank you.

Donations

  • Anonymous 
    • $1,000 
    • 14 mos
  • Lou Dellarosa 
    • $100 
    • 20 mos
  • Brion Shearer 
    • $65 
    • 20 mos
  • Arielle Paul 
    • $75 
    • 20 mos
  • Samantha Christie 
    • $50 
    • 20 mos
See all

Organizer

Cherilyn Wilson 
Organizer
Sherman Oaks, CA
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