My daughter Angelina was diagnosed with Lupus SLE in November of 2014. Lupus has completely taken over not only her life but my families lives. Angelina has always been an active girl, from playing the violin to softball. She loved going to school every day, she had excellent grades and planned on doing so much.
Angelina was always a healthy little girl who rarely got sick. Angelina loved the outdoors, she was my hiking partner, my running partner and my little work out partner. She had excellent grades in school and received several academic awards. Initially we thought she was having an allergic reaction. Angelina ended up in the ER one afternoon with a swollen face. Benadryl was given to her to alleviate the swelling. She went to school the next day of course because she loved school so much she refused to miss one day without her friends. That afternoon I was called by the school and asked to pick her up due to Angelina running a temperature. I took her to see her pediatrician and of course was told that there’s been situations in where an allergic reaction can cause a fever so she may need to be home for a few days. Two days later after an 8 hour work day, I came home to find Angelina with a swollen neck , she could hardly breathe. I immediately drove her to the ER, the Doctors there couldn’t do anything for her. At that point the ER doctor contacted Loma Linda Children’s hospital and immediately transported her by ambulance.
One of the scariest things a parent can experience is not knowing what is going on with their child. I drove my car behind the ambulance from Chino to Loma Linda scared out of my mind, not realizing that Loma Linda Children’s hospital would be our home for the next 7 days. After several exams, blood work and a kidney biopsy we were discharged from the hospital not realizing just how much our life was about to change.
Angelina is currently enrolled in home/hospital for her education. She is limited to no more than 30 minutes of sun exposure per day. She has very little interaction with her friends, she no longer plays the violin or softball. At times she can barely get out of bed depending on just how severe her swelling or pain is. Angelina has gained 40 pounds due to the steroids and is currently losing blotches of hair on a daily basis. Angelina is currently on her 2nd treatment of chemotherapy and is scheduled to receive four more treatments.
As a single mother of three children, working full time with mandated overtime, life has been nothing but a challenge for me. I strive to make the best out of every day that goes by, hoping and wishing for a miracle that one day my daughter will wake up without pain, without aches and will finally live life as any normal 15 year old should.
Angelina loves to listen to Drake, she enjoys puzzles such as soduko and loves watching her Dodgers, especially Puig. Besides suffering from migranes, joint pain and abdominal pain I am afraid that Angelina might be showing symptoms of depression. There isn’t anything I wouldn’t do for my children. I would switch places in an instant so that she may enjoy the sun, enjoy her friends, school dances, the mall, Magic Mountain, the park, a quick run or just a day without pain. She hopes to one day meet Drake, Puig or visit the Statue of Liberty.
My oldest daughter is 21 years of age and if it wasn’t for her help, I don't know how we would be be able to make it through all of this. While I am at work during am shift hours, my oldest watches over my 4 year old and Angelina. Angelina’s flares have gotten so bad to where her vision has been affected, she couldn’t see for almost a week. Angelina’s body is like a roller coaster, every day is a challenge for her. Due to sudden allergic reactions, and possible seizures Angelina cannot be left unattended.
Thank you so much for your willingness to help, god bless you all!
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