Nikki’s Story
Our 12 year old daughter, Nikki, was diagnosed with POTS (postural, orthostatic, tachycardia syndrome) in February of 2008. Nikki was a competitive gymnast, who had been doing gymnastics since the age of two and a half. She had a passion for gymnastics and loved it more than life. Her friends were centered around the gym and gymnastics became her identity.
Many days, after working out for hours at a time, Nikki would complain about chest pains, shortness of breath and dizziness. These were all dismissed by doctors, as normal growing pains. At seven, she had a bad fall off of the high bar and injured her back. Although the x-ray was negative, she complained of lower back and neck pain, from that day on. At age 9, we discovered she had a stress fracture in her navicular bone, a bone the doctor said he had never seen broken before. Three months after her cast came off, she had her state gymnastics meet. That morning her feet were so swollen, she could barely walk. She decided to compete through the pain. Later that day, she took first place all-around in the state of Illinois for level 5. As she stood on the podium, tears rushed down my face, not because she had won, but because of all the courage and will it took to get there. Had I known then that this same courage and determination would be needed every day of her life, 3 years later, just to get out of bed in the morning, I would have cried even more.
By age 11, Nikki was working out in the gym 17 hours a week. She got a severe headache that lasted 3 weeks and her eyes began twitching uncontrollably. After numerous tests, we were relieved when the neurologist diagnosed her with migraines. He put her on periactin. The drug made her gain 15 pounds in three months. Following this dramatic weight gain, Nikki broke both of her feet doing gymnastics. She was placed in two hard casts and a wheelchair. This is how she began her first days at her new middle school. Once the casts came off, she still complained of tremendous pain in her feet. Her feet were still swollen and turning blue. She was diagnosed with RSD (reflex sympathetic dystrophy). She was sent to a pain clinic and put on many drugs, none of which relieved her pain. As the days went on, more symptoms began to surface. Her stomach began to hurt; she began to develop visual disturbances, joint aches, fatigue, and tachycardia. Her dizziness became so pronounced; she could no longer make it through a full day of school. About four months later, an article in our local paper came out about 2 area girls who had POTS. A light bulb went off in my head, as I read about every symptom my daughter had ever complained of. The article led me to Debbie Dominelli, president of Dynakids. Debbie guided my family through some of the toughest moments of our lives. Within a month, Doctor Blair Grubb in Toledo, Ohio, diagnosed Nikki with POTS.
Although, we are often disheartened about what has happened to our daughter’s health, we are trying hard to focus on all of our blessings, and believe it or not, there are many. We point these out to our daughter every day. First, we are so happy that our daughter’s illness is not terminal. We know that she will be around for a long time; not too many parents’ with sick children can say the same. We are very lucky. Secondly, the school that Nikki attends, Twin Groves, in Buffalo Grove, Illinois, has been beyond accommodating. The social worker called us soon after Nikki became ill, to ask how the school could be of assistance. They told us how we could get her to qualify for a tutor. They quickly set up an emergency 504 plan and made all the accommodations, plus more, that we had requested. They set up a rest area for her in one of the upstairs offices, began doing fundraisers, and moved her classes to the afternoons. The nurse would even escort Nikki to class; just to make sure she got there safely.
Nikki also won first place in the state of Illinois, for an essay she wrote to Dan Millman, author of the book The Peaceful Warrior. Nikki got to meet Jesse White, secretary of the State of Illinois. Mr. White was so impressed by her story that he is actually trying to help us get a story about POTS on the Oprah Show. Spreading awareness is so critical to POTS that I even called The Make-A-Wish Foundation, to try to help with this. Unfortunately, they could not help us get on the Oprah Show, but they were able to grant Nikki’s second wish, which was to go to the Beijing Olympics and watch women’s gymnastics. Nikki also wanted to meet the USA Team. Many people on the Olympic Committee are trying to make this part of her dream come true, as well. So many people have stepped forward to help, that we have been overwhelmed by the kindness of others. Nikki’s friends have been wonderful, too. They come to visit her, ask her to go out with them to the movies and call to check in on her. Now when people feel sorry for us, I simply reply, “We are some of the luckiest people in the World.” Life certainly has its ups and downs for us and every day is a new day with its own challenges. But my whole family has a renewed belief in G-d, and we are learning to live for each moment. Some moments are good and some are not as good, but we feel with love, hope, and the goodness of our fellow human beings, Nikki will get through this challenging time in her life and will come out of it a more courageous, empathetic and spiritual person.
Nikki has since reinvented herself. She got straight A’s this whole year, despite her illness. She has developed a love of writing. We have assured her that she can affect more people through her writing than all of her gymnastics accomplishments, combined. She has appeared on ABC News and NBC and Fox News Chicago, plan on covering her story, as well. She has also been in the Chicago Sun-Times and several area papers.
Nikki was taught in gymnastics that when you fall off the balance beam, you have to get right back up, and we believe she will do just that!!!!!!!