b'This disease affectsmy livelihood andmy ability to providefor my family.I need a cure.CRYSTAL GARRETT (Miss South Carolina 2007)Atlanta, GA(and crazy expensive my dad says) and I have to be careful notConnor has raised money for research, stood on the NY State to get hurt. I love to play soccer so you can see my dilemma. Senate floor telling his story, and shared his story to the world. Research would mean a cure. A cure would mean no more infections, no more hospital stays, no more restrictions, noHATTIE JOHNSON fear of losing your leg (due to infections spreading to your Cambria Heights, NY bones) and not being able to do what you love. In 2016 I developed a lump on my thigh, at first I thought it wasAt 13 years old, Connor has overcome and fought harder than any just a pimple. Within weeks it grew so fast my PCP told me sheindividual I know. He vows to find a cure for all suffering from believed it was sarcoma and sent me to a surgeon. Within a month Ilymphatic disorders and urges you all to help him! Thank you.had cancer and lymph nodes removed and two months of radiation. Then the pain and swelling started. I used to run and play with myMARY PARGASgrandchildren, now I cant walk fast enough to keep up with anyone. I have missed a lot of family functions because sitting orPelham, NYstanding longer than ten minutes causes excruciating pain andIn 2008, at age 51, I was diagnosed with uterine cancer. I had a total swelling. Today I take pain medicine, do exercises, and pay for lotshysterectomy upon the advice of my GP, who also told me that of equipment and compression garments l truly cant afford. Forwould take care of it all. Less than six months later it had returned. three and a half years Ive had ups and downs but no cure. This time I was told my chances of beating it were 50/50. After 34 My quality of life is so low and depression is part of my life. rounds of radiation and a year+ of chemo, I was set free without My insurance hardly pays for anything. I stopped therapya word of warning about lymphedema, even though I had some because I couldnt afford it. early signs that I brought to the doctors attention. I was grateful to be cured and even with years of frequent followup appointments, JENNIFER & CONNOR LOOBY I was never warned about how to avoid or recognize lymphedema.I had swelling in my ankle and foot if I stood too long, if it wasMahopac, NY hot out, and was told many people do.Connor was diagnosed with a rare lymphatic disorder at six weeksIn August 2019 my entire right leg blew up during my daughters old. We were told there was no cure and minimal research about it.wedding weekend. It never went away despite elevating it and Connor has been hospitalized hundreds of times for infections, sitting out the dancing and celebration. It took several months onlow immunoglobulin levels, and the reasons go on and on. Whena wait list to see a specialist to evaluate my leg and recommendyour child is known to every doctor and nurse in the hospital it isany therapy for it. I am still grateful to be living but mourn that it comforting he will get the care he needs, but also terrifying.means the end of being able to stand long enough to finish a AN AMERICAN TRAGEDY 29'