Medical Transportation for Raphael
Hi my name is, Raphael Strauss. I was born with an extremely rare skin disorder called, Xeroderma Pigmentossa. In short i have no immune system to repair damage from UV Rays from any source especially the sun. I have gone through over 300 hundred surgeries for the removal of skin cancers; Basil Cell Carcinoma, Squamous Cell Carcinoma & Melanoma. More information can be seen at, www.XPSOI.com. I am raising funds so that I can purchase a reliable vehichle that will be safe for me to travel to my medical appointments in a safe way. Please this is an urgent matter, at the moment I'm getting rides in vehicles that are not safe for me to travel in due to exposure to the UV Rays. The sooner that I will be able to raise the funds the sooner I will be able to protect myself while going to medical treatments. Every donation counts, Please I ask that everyne who see's this to share it with your friends and to open your hearts and donate towards a great cause. Words can not express how thankful and grateful I am. With your help I will be able to get one step closer to a peaceful life, knowing that I will be safe when traveling to and from medical treatments.
All the best,
My name is Raphael Strauss I am one of fewer than a thousand people in the whole world to suffer from one of the rarest genetic disorders. I was born with Xeroderma Pigmentosa in short XP. It is estimated that 1 in 1 million people in the United States may have XP. In short people with XP have no immune system to repair any damage from Ultraviolet Rays resulting that a patient with XP has a nearly 100% risk of developing multiple skin cancers; Basil Cell Carcinoma, Squamous Cell Carcinoma and Melanoma if their environment is not carefully controlled. XP can be certainly considered as a lethal disease because in the end most people with XP will die from the consequences of one of their skin cancers if we're not vigilant enough to spot the cancer and it has a chance to spread, that can surely be lethal.
Most people think of UV rays only coming from exposure to the sun, but what most people are not aware of, is that most light bulbs such as, Fluorescent, Halogen, and even some incandescent light bulbs give off a significant amount of UV rays. The damage done early in my life hit me like a death sentence. I was around the age of thirteen when I had started what was unknown at the time a hike of surgeries for the removal of skin cancers. To date I have overgone an estimated amount of over 300 surgeries and close to 60,000 biopsies. I remember at age thirteen getting prepped for surgery and the surgeon telling my parents that I will be going into the operating room looking of God's creation and I would come out looking not of God's creation, leaving my face completely unsymmetrical, therefore attracting many over lookers.
Due to the fact that this disorder is so rare, not many people know about it. I am reaching out to try raise awareness of the disorder and help make the world be more knowledgeable about the disorder. As of now I am a prisoner in my own home. I can't work, I can't be outdoors. In other words In no way am I trying to minimize the importance of any other disorders that may exist today. I'm just trying to state the facts that even other people who suffer from other rare disorders can't be compared to XP in any way. For example, a person suffering from leukemia, can still enjoy life outdoors. A person who suffers from down syndrome, can still enjoy life outdoors. A person who is wheelchair bound, can still enjoy life outdoors. Where as a person with XP cannot escape the boundaries of his four walls. The things that most people take for granted and don't even think twice before engaging in their daily schedule, people with XP not only need to think twice before making a move in their schedule they need to think more than twice. Please I am asking for your help to raise awareness of this disorder and help me live.
The waiting for pathology results and surgeries this has been my life since age of 13 which is very stressful. The first time I went to surgery at age of 13, both me and my mother were crying, when I had to go to the second surgery when they came to roll me in on a hospital bed I asked to walk to the operating room. when I turned around I saw my mother crying so I went and gave her a big hug, I asked her why she was crying. I told her that if God wanted to take my neshama he would have by the first surgery and the fact that I'm still here means that I still have what to do in this world. .
Through life's experience I've learnt that life is not a restaurant, you don't get to pick and choose what you want to served. In life you have to find the right formula of trust and request the right utensils to live with the package that you were served. My favorite verse in the Amidah of Sabbath is, "Va'Yismach Mosher B'Matnat Chelko, Ki Eves Ne'Eman Karata Lo", Moshe was happy with his portion because God called him an honest slave. Moshe's task wasn't an easy one To release Am Israel from Egypt and from under Pharaoh's ruling was not easy. All of Israel saw all of God's wonders and when they reached the sea they saw Pharaoh and his army behind them and the sea in front of them, and Moshe scream out to God. Godthan said to Moshe, What are you screaming to me for speak to your nation and move. All it took was one person who had belief and trust and God to walk into the ocean and it split, in life we have to move, cause if we don't we don't believe and trust in life. .
God is Chofetz Ba'Chaim, he wants us to live. God gives us tests to see how much we believe in him and give us the opportunity to grow closer to him. I know I have all the right in the world to get depressed and go down, but once I get down it will be so hard to get back up, so I learnt and choose to love Ha'Kadosh Baruch Hu. Because life is beautiful, we have to look at the good in life and when life throws curveballs look at the good and be happy.
Torah gives us the power to change for the good and know that life is better with God in our Lives and that we shouldn't run away but get closer to him. You know the saying, "The cup is either half empty or half full", well I thought of another saying, people usually say that, "They're here and God's with them, but just think about it for a second. if you change the saying around to say, "God's here and I'm with him", it's much stronger isn't it.
Karov Hashem Lechol Korav, Lechol Asher Yikrehu Hu Be'Emet. We learn as Jews that we need to thank God both for the good and the bad, and we say in the tfillah, "Ki B'cha Batachnu, in you I Trust, then what room do we have to complain but wake up in the morning say, Modeh Ani and be thankful he gave us another day do be great full and do mitzvot and do good. Please I'm asking all of my friends and the community to help me reach the second half of my goal to be able to live a more secure life, a life without worries when I have to get from point A to point B. God bless you all and thank you in advance for every donation, cause every donation counts.
All the best,
I've said it before and I'll say it again, words can not express the gratitude and appreciation I have for all of your support. Therefore I would like to reach out to every single one of you and try and to express to you my limitation in in which almost every person takes for granted in his day to day life that I experience every single day. When a person without Xeroderma Pigmentossa, in short XP decides that he wants to open a window to freshen up the house, he doesn't think twice about it he just does it. When person without Xeroderma Pigmentossa, in short XP wants to go outdoors for a walk to breath some fresh air and enjoy the warmth of the sun, he doesn't think twice. When a person without Xeroderma Pigmetossa, in short XP wishes to go to a restaurant, a fast food joint, a café or simply a stroll around the nearest mall, he doesn't think twice. If a person without Xeroderma Pigmentoss, in short XP wants to go for a ride using public transportation via Taxi's, Busses and or train he doesn't think twice. If a person without Xeroderma Pigmentossa, in short XP wishes to get a ride with a friend of his he doesn't think twice. Please I'm not asking for anyone to step into my shoes, But I am asking for everyone to understand my situation and what I have to deal with. You see all of the basic things in life that most people take for granted and don't even think twice about doing I unfortunately have to think more than twice before I make a step in my daily schedule. If it's opening up windows, I can't therefore the air conditioner is on all day. If it's going for a stroll around the park, I can't it's going outdoors only after sundown. If it's taking public transportation and or getting a ride from a friend, I can't because my car needs all of the windows to be tinted with a Ultraviolet Ray blocking film usually made by 3M, because most vehicles that come with already tinted windows they are usually just darkened for privacy and does not block out U.V. Rays. Before I go anywhere I need to check the are with a UV meter that measures how much sun exposure there is and only if it's zero can I go. Have it the mall, the café, the restaurant, I also have to check the area because some lights such as Fluorescent light bulbs, Halogen light bulbs and even some incandescent light bulbs give off U.V. So again I'm asking that you please help me spread my campaign with you family and friends so that I can reach my goal and would be able to purchase a reliable vehicle where I can be safe when I'm traveling to and from my medical appointments.
All the best,
Thank you everyone for your donations. Please I ask you all to continue opening your hearts and help this dream become a reality and get me one step closer to my goal. All the best, Raphael Strauss