Watch out Washington, here comes Scarlett!

On February 21st 2018, Scarlett went into full cardiac arrest around 3:30 in the morning. I remember having a hard time last year at this time, but I think this year has been even more difficult. We still have a lot of unanswered questions about Scarlett and her diagnosis. Scarlett has RALD. Ras-associated leukoproliferative disease. When she was first diagnosed and I was told she had RALD. I thought it was just a genetic mutation making her lupus more aggressive. It is actually it’s own disease process. It is extremely rare. Less than one in a million children will develop it. Through the whim of fate (by that I mean God) I met another parent online in our lupus support group whose child also has RALD. She directed me to a doctor at the National Institute of Health who specializes in RALD research. Needless to say a few days later and I was directly speaking to Dr. Rao on the phone with plans to have all of Scarlett’s medical records sent to him so the NIH can follow her long term and in a few months we will be making the journey to the NIH outside of Washington D.C. for her first appointment. This is extremely incredible to have the TOP RESEARCHERS in the country studying Scarlett and following her long term. Scarlett’s rheumatologist at Sanford is also excited for her and they will collaborate with him as well. I hope that not only can Scarlett help other children with RALD and autoimmune phenomena, but I also want answers. Her long term prognosis is still really unknown although I’m optimistic most of the time. I read one article that stated any child with RALD will likely develop cancer at a young age. Hopefully collaborating with the NIH will give Scarlett the best possible outcomes and I’m excited for her case to help other children with the disease.

A few months ago I applied Scarlett for a scholarship to attend the 2020 Lupus Advocacy Summit in Washington D.C. in March. Her inspiring story must have won a few hearts as she was chosen from over 200 applicants to attend the summit and share her story with Congress helping to raise more funds for lupus research. Raising awareness for lupus and sharing Scarlett’s story has been my personal mission since she came home from the hospital.

When Scarlett first got sick I was devastated and angry. I could not accept the fact that I would have to bury my baby even when we were told she was not going to survive. Why did Scarlett draw the short straw? She didn’t deserve the crappy diagnosis she was handed, but neither did any of the cancer kids I watched walking the hallways at Sanford pushing their IV poles or any child for that matter. At times when she was on the brink of death the only comfort I could muster is that Scarlett had the perfect life. She had never known anything but love. My hope is that Scarlett’s life is going to make a positive difference in other children’s lives. I hope her medical course becomes the blueprint for which other doctors use to treat patients successfully. Watch out D.C. because Scarlett and this momma are coming and we’re on a mission with a vision to improve Scarlett’s outcomes and help other kids like her and a passion that is not slowing down.