After countless Dr. Visits, and multiple medical tests performed throughout the years, the Rose family Matt and Joy (parents) have received a devastating heart-breaking diagnosis for three out of four of their children. Mia, Ava, and Hunter ages 14, 10, and 4 have all been diagnosed with a rare fatal illness, Niemann Pick disease type C. Niemann – Pick C is a rare, inherited disease that affects the body’s ability to metabolize fat (cholesterol and lipids) within the cells. These cells malfunction, and over time will die. Niemann - Pick C affects the brain, nerves, liver, spleen, bone marrow, and in severe cases the lungs. People with this condition experience symptoms related to progressive loss of function in the nerves, the brain, and other organs. There is currently no cure for NPC disease. The treatment is supportive. Children usually die from infection or progressive neurological loss with a life span of mid-teens to early 20s. The lives of the Rose family will be forever changed, as we come together, and ask for support and assistance from our family, friends, and the community in hopes to reach a goal of $80,000 to provide Mia, Ava, and Hunter with the necessary supportive medical treatment necessary to treat the symptoms of this disease, and hopefully slow the process down and give this family more precious time together with Mia, Ava, and Hunter. Matt and Joy both work full-time. They are currently around 50,000 in medical debt from the numerous testing and Dr. Visits before NPC diagnosis. This debt continuous to climb, as Mia, Ava, and Hunter need a medication called Migl Ustat, this medication is used to treat the symptoms and slow the disease process down, after the insurance deductible this medication will cost $3,600 per month, $1,200 per child, to give all three children the medication. This does not include the airfare to and from the Mayo Clinic for all 6 family members to fly to Minnesota, and every other week from Portland Oregon to Oakland California for a trial medication that Mia, Ava, and Hunter have been expected to participate in. As Mia, Ava, and Hunter progress in the disease process, Matt or Joy will need to stop working to stay home and take care of their children leaving more of a financial burden on this family. We are reaching out and asking for help from the community to reach our goal in hopes of lessening the financial burden for this family. I ask that you please share with your family, friends, and across your network of social media to spread the word in hopes to reach a goal of 80,000. Any donation is very much appreciated and will go towards medical expenses and medical debt for Mia, Ava, and Hunter. Thank you all for your support through this tragic life-changing NPC diagnosis.
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