Scarlit Rose

Indie Pop Music Artist + Artivist + Advocate

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Copyright Scarlit Rose Productions 2017

Rose’s Medical Trust - proposed use of funds template

If my music art and work could reach many, many people willing to make a pledge, for great music & more, to my Fundraising Shop - it helps me get a new lease on life, by getting control of a condition which has (in the past few years) spiraled out of control, in spite of all my efforts.

List of how 200 thousand dollars would be used:

Surgery and hospital/travel fees: 75,000.00

Rare disease/Metabolic disease/Geneticist Doctors: 10,000.00 - 30,000.00

Stem Cell treatment: 10,000.00

Dental: 10, 000 -

10% to an account for my sons’ Pearson and Elliot

= whatever may be remaining for other supportive treatment/healing/recovery needs, such as;

  • physiotherapy and homecare help (food prep, house help, so I could preserve my strength to get stronger and for my work - which also gets me stronger, because I have to sit up and use my core to sing, for example.)

  • medical equipment like tape and specialized custom ‘flexible’ bracing (which is more expensive than we’re been able to afford.)

  • better dental, so I can chew without pain

  • specialized foods and supplements known to help support musculoskeletal health, and internal health, in people with conditions like EDS, muscular dystrophy, and autoimmune problems.

  • cost of modifying our place of living to be more disability friendly (which it currently is not) and helpful kitchen appliances ie. ‘chopping machines’ (because my hands are weak and fingers often dislocate.)

  • proper bed to support spine (which we do not have) etc.

  • household items like chopping machines for kitchen, good blender, etc.

  • More info re: list

    All funds raised will go into a Trust to be used for health purposes, with the priority being specialized Neurosurgery. If I reach my goal, I want to tithe 10% back into a savings account for my boys, which will double on the dollar for every dollar saved, and be accessible when they are young adults. However, it’s really important that I also get help via rare disease internal medicine, because I have developed atypical diabetes and other problems with weaken my body in terms of going through a major surgery and recovery.

    My neck is unstable and slowly collapsing under the weight of my skull, from C1-C6 (the first half of my neck) and since I have EDS, I need a specialized to perform a surgical fusion on it, with a specific technique. A typical neck fusion could be seriously dangerous for me, and not have a good chance of success. For this reason, doctors here do not even like to do it, and sometimes refuse to do it.

    The cost of the proposed Neurosurgery itself is approximately 75,000.00 . This is after Dr. Henderson has offered me a reduced rate for his fee (19,000.00 to fuse C1-C6) plus the hospital care and travel fees. After that, funds will be used to help cover the immense costs of continuing recovery management - including support for the other complications of EDS, which can interfere with recovery.

    This especially relates to the metabolic, immune and digestive systems - and having good food that the body can tolerate and promotes healing (this is a tough one with EDS, as our Gi and immune systems are sensitive and finicky.) Supplements, which can be costly, also help promote healing.

    A rare disease/mitochondrial genetic specialist can help me put together a care plan (best medications, supplements, and diet - depending on the metabolic and genetic defects which cause my body to have impaired processing.) These consultations and diagnostic efforts may cost between 10,000 - 30,000 dollars.

    Also, if there are extra funds for it, is to receive a type of Stem Cell injection called Whartons’ Jelly. It is a special type of stem cell taken from umbilical chords, and it helps to strengthen and reset immune, metabolic and cellular systems. It is known to hugely help autoimmune disorders and actions in the body, which are often present in EDS patients, making things a lot worse and attacking what needs to be healing. I have a family history of autoimmune disorder, and co-morbid challenges with a deregulated immune system too. I have Immunoglobulin A, and Complement C3 deficiencies. This has caused immune affects that have added a lot of insult to my condition, though I’ve tried my best to ‘control’ it with supplements and certain herbs, with partial (but not enough) success. The injections would be given to support the internal body systems, especially my immune system, through the bloodstream (IV) and also one is given intramuscular, to support and promote repair of the musculoskeletal system. This is also very important with EDS.

    The Stem Cell injections are, in total, a 10,000 dollar cost. We are hoping to have this next on the list (priority being surgery) because it has shown such promise in people with systemic chronic diseases like Lupus, RA, Fibromyalgia, and so on. The professional who offer it have high hopes that it would also help EDS. Since EDS is a degenerative disease just as the others mentioned, there is promise that the Stem Cell treatment would help to slow the process. Even though patients with EDS receive spinal fusion surgery, they may go on to continue degenerating, and thus may end up needing more surgeries in the future…and continue to battle an illness which is in ‘attack’ mode on the body.

    I am hoping to prevent, or at least slow that for me, by doing the Stem Cell treatments after the necessary surgery, to promise the best chance of healing and recovery. However, we will use raised funds in a priority sequence, with the cervical fusion surgery being top of the list. The stem cells are next to that. Then after that, recovery therapies such as physio, integrative support, and medical equipment that can help me do the physio and get stronger again, such as hypoallergenic K tape for joints and muscles and other special bracing that is flexible and supportive, and helps EDS patients do physiotherapy without injuring, so they can get stronger again.

    This is a personal subject, but EDS has also affected my teeth. I am self conscious about this, but try my best to ‘make do’ and own my ‘quirky’ smile. My friends and family tell me my quirky teeth are ‘cute’ and ‘part my character.’ However, the act of chewing is painful, and my molars are especially affected. I am living with old and worn work for almost all my chewing molars. I’ve done my best to keep up with my EDS related dental problems (which are due to highly sensitive nerves, weakened enamel, poorly aligned bite and dental crowding of my teeth - all features of good ol’ EDS!) However, I have very worn dental appliances which are difficult to chew with, put too much pressure on my jaw (which is hyper mobile) and needs to be properly replaced. I do not have full coverage to deal with this, so I just put it on the back burner, do my best to keep up with my dental hygeine, ignore pain while I chew, and leave it at that…because I do love food! If there are some available funds left over, it’d be great to get new, solid dental work (done by a specialist who is aware of complex health problems!) and put me out of pain. :)

    An ideal goal amount is 200,00.00 dollars. This can be achieved by reaching many, many people ie. for the word about my fundraising efforts to really get out there, and go viral. Again, I will also try to earn some of this, but I am not allowed to actually earn more than 12,000 dollars a year, without it being deducted from my living expenses. This is why I am also fundraising. Pledge donations are considered ‘gift’ rather than earning, and I am allowed divert pledge donations into a specialized Trust fund, set up for medical purposes.

    I don’t want private jets and diamond rings - I just want to live.

- Rose