Life With Scleroderma Is Costly!
Donation protected
Great Day Go Fund Me Patrons!!! My name is Demetria Williams and I am one half of TheWonderTwinz dynamic duo hailing from Miami Florida. I am a warrior survivor of five different Auto Immune Diseases of which Systemic Scleroderma is the most aggressive of the five (Rheumatoid Arthritis, Mixed Connective Decease, Raynaud’s disease and Sjogrens disease) which has adversely affected my life. As you can see, I am adorned with an oxygen enriched cannula, which is a vital component to sustaining my life by providing me continuous oxygen for 24 hours a day. There are no days off for me living with this debilitating disease. As an unemployed, permanently disabled single mother of two, I face challenges that extend far beyond my health conditions. But I am determined to model for my children and identical twin sister that resilience, faith and tenacity will move mountains because “I Dare To Live”!
Nevertheless, “Daring to Live” is the mantra that undergirds this Go Fund Me Account as it is a bi-product of my dire need to off-set my medical, living expenses and support my platform to continue to tell my story and empower other disabled persons like me that we have a VOICE and right to live life more abundantly! People often ask me how can they help me and until today I was ashamed to ask for tangible support. To be honest, it has taken me over a year to put aside my pride to solicit financial support despite the murmurings of supporters here in the greater South Florida area. I am in a space where I realize that I truly need the help which was influenced by my recent near death experience on July 8, 2016, as a result of my Medicaid being cancelled and my inability to pay out of pocket fees for chemotherapy.
Navigating life with Scleroderma and various auto immune diseases has been an arduous task as there is no cure for this disease as well as limited treatment options. I am currently in the last of option of treatment which is chemotherapy with high steroid usage to impede the progression of these diseases. I am also seeking to participate in viable research efforts for pulmonary fibrosis and interstitial lung disease due to my bout with Systemic Scleroderma. During my most recent hospitalization, I’ve had to re-structure my life due to limited mobility as I now use a wheelchair and walker. I am determined to not let these impediments stop me from living and inspiring others.
As a plus model, whose platform is pushing body positivity, daily I am re-authoring 90lbs of weight gain due to high steroid usage for 13+ months encroached on this page are two video bodies of work “In the Day in the Life of TheWonderTwinz” and “1.0 I Dare You to Live” which sheds light specifically on the emotive work at present daily. Moreover, it is both my twin sister Davica Williams and myself to raise an access of $15,000+ off set medical and living expenses for the next two years. The strain of my medical expenses and living expenses has taken its toll on my sister as her health and finances has been adversely affected due to seeking gainful employment. My sis has been my anchor and wind beneath my wings the past two years and we are now both vigilant about life with auto immune disease.
Albeit, it is my hope that someone or an organization will be lead to donate a battery operated FAA oxygen machine to be used to spread awareness to be a part of visibility of Scleroderma awareness efforts. If not, apart of $15,000 will be used to purchase a portable battery operated concentrator which roughly costs range from $2,500- $4,500. Obtaining this device is essential for me to travel for speaking engagements and to enjoy simple moments at the beach or park with my children and loved ones. Additionally, I also utilize a nightly oxygen compressor 5L and portable oxygen concentrator. I received a quote to purchase both the oxygen compressor 5L and the battery operated portable oxygen machine valued at $3,750. My monthly prescription costs $800 plus. My monthly oxygen rental is $209 which includes the oxygen compressor 5L and portable oxygen concentrator. On average our family of five grocery bill runs anywhere from $600 to $800 dollars out side of $350 that I receive in governmental assistance for a family of 3. I am seeking to totally shift my dietary consumption as organic eating is very expensive especially for a family of five as well as with vitamin supplements. My disability benefits only cover a fraction of my previous income, thus, I have exhausted all of my savings. I also was also prescribed to attend occupational and physical therapy to assist with my current recovery, but unfortunately, I can’t afford the $105 per session three times a week for OT and PT for four weeks and beyond. My expenders include life insurance (quarterly), utilities, rent, car note, car insurance, and cellular telephone which is needed to conduct business and personal transactions. Transparently my disability benefits cover half of the total monthly expenses $2,226. So the $15,000 campaign is to true to offsite the strain of living for the next two years until Medicare kicks in. In conjunction, I need to acquire a pain management physician and a cardiologist. I am at my wits end on how I am able to survive for the next two years on disability before Medicare kicks in. Lastly, I roughly need an additional $1,700 for moving costs with transfer fees to move from my second floor unit to a ground floor unit as climbing stairs has taken its toll on my body and respiration.
In conclusion, I want to thank you each of you in advance for sowing a monetary seed to assist me in my time of need. It has been through the generosity of compassionate supporters, family and friends alike that have encouraged me to take this act of faith and walk of humility to say “I Need Help”. In the event we surpass our set goal of $15,000 all additional monies will used to continue to offset medical costs and to assist in the implantation and sustaining of Sister Circle Mentoring support groups provided by The WonderTwinz LLC. in the Greater South Florida area. It is truly all about us paying it forward! Love and light to you all! Follow our Facebook Fan Page TheRealWonderTwinz IG: TheRealWonderTwinz Website: www.therealwondertwinz.com #WonderTwinzDomination #HelpUsFindACure #TheRealWonderTwinz
Nevertheless, “Daring to Live” is the mantra that undergirds this Go Fund Me Account as it is a bi-product of my dire need to off-set my medical, living expenses and support my platform to continue to tell my story and empower other disabled persons like me that we have a VOICE and right to live life more abundantly! People often ask me how can they help me and until today I was ashamed to ask for tangible support. To be honest, it has taken me over a year to put aside my pride to solicit financial support despite the murmurings of supporters here in the greater South Florida area. I am in a space where I realize that I truly need the help which was influenced by my recent near death experience on July 8, 2016, as a result of my Medicaid being cancelled and my inability to pay out of pocket fees for chemotherapy.
Navigating life with Scleroderma and various auto immune diseases has been an arduous task as there is no cure for this disease as well as limited treatment options. I am currently in the last of option of treatment which is chemotherapy with high steroid usage to impede the progression of these diseases. I am also seeking to participate in viable research efforts for pulmonary fibrosis and interstitial lung disease due to my bout with Systemic Scleroderma. During my most recent hospitalization, I’ve had to re-structure my life due to limited mobility as I now use a wheelchair and walker. I am determined to not let these impediments stop me from living and inspiring others.
As a plus model, whose platform is pushing body positivity, daily I am re-authoring 90lbs of weight gain due to high steroid usage for 13+ months encroached on this page are two video bodies of work “In the Day in the Life of TheWonderTwinz” and “1.0 I Dare You to Live” which sheds light specifically on the emotive work at present daily. Moreover, it is both my twin sister Davica Williams and myself to raise an access of $15,000+ off set medical and living expenses for the next two years. The strain of my medical expenses and living expenses has taken its toll on my sister as her health and finances has been adversely affected due to seeking gainful employment. My sis has been my anchor and wind beneath my wings the past two years and we are now both vigilant about life with auto immune disease.
Albeit, it is my hope that someone or an organization will be lead to donate a battery operated FAA oxygen machine to be used to spread awareness to be a part of visibility of Scleroderma awareness efforts. If not, apart of $15,000 will be used to purchase a portable battery operated concentrator which roughly costs range from $2,500- $4,500. Obtaining this device is essential for me to travel for speaking engagements and to enjoy simple moments at the beach or park with my children and loved ones. Additionally, I also utilize a nightly oxygen compressor 5L and portable oxygen concentrator. I received a quote to purchase both the oxygen compressor 5L and the battery operated portable oxygen machine valued at $3,750. My monthly prescription costs $800 plus. My monthly oxygen rental is $209 which includes the oxygen compressor 5L and portable oxygen concentrator. On average our family of five grocery bill runs anywhere from $600 to $800 dollars out side of $350 that I receive in governmental assistance for a family of 3. I am seeking to totally shift my dietary consumption as organic eating is very expensive especially for a family of five as well as with vitamin supplements. My disability benefits only cover a fraction of my previous income, thus, I have exhausted all of my savings. I also was also prescribed to attend occupational and physical therapy to assist with my current recovery, but unfortunately, I can’t afford the $105 per session three times a week for OT and PT for four weeks and beyond. My expenders include life insurance (quarterly), utilities, rent, car note, car insurance, and cellular telephone which is needed to conduct business and personal transactions. Transparently my disability benefits cover half of the total monthly expenses $2,226. So the $15,000 campaign is to true to offsite the strain of living for the next two years until Medicare kicks in. In conjunction, I need to acquire a pain management physician and a cardiologist. I am at my wits end on how I am able to survive for the next two years on disability before Medicare kicks in. Lastly, I roughly need an additional $1,700 for moving costs with transfer fees to move from my second floor unit to a ground floor unit as climbing stairs has taken its toll on my body and respiration.
In conclusion, I want to thank you each of you in advance for sowing a monetary seed to assist me in my time of need. It has been through the generosity of compassionate supporters, family and friends alike that have encouraged me to take this act of faith and walk of humility to say “I Need Help”. In the event we surpass our set goal of $15,000 all additional monies will used to continue to offset medical costs and to assist in the implantation and sustaining of Sister Circle Mentoring support groups provided by The WonderTwinz LLC. in the Greater South Florida area. It is truly all about us paying it forward! Love and light to you all! Follow our Facebook Fan Page TheRealWonderTwinz IG: TheRealWonderTwinz Website: www.therealwondertwinz.com #WonderTwinzDomination #HelpUsFindACure #TheRealWonderTwinz
Organizer and beneficiary
Demetria Williams
Organizer
Miami Gardens, FL
Davica Williams
Beneficiary
