08/05/2012
Martina is the daughter of Rick and Rosa Baca & Allen and Theresa Horne.
I’ve had so many people ask what is going on with Martina and why we need to go to the Mayo Clinic. I am starting to find myself more and more emotionally drained, each time I answer this question. So I am going to try to explain everything so that everyone can read and understand a little bit about what is going on with Marti.
Martina was diagnosed with Congenital Fiber Type Disproportion when she was 5 years old. When she was diagnosed, we were told that she would be in a wheel chair by the age of 12 if we didn’t keep her active. Allen and I decided that we would NEVER treat her any different than our other kids. She was expected to get good grades (which proved hard because she has so many problems with tracking and processing), she was expected to help out with chores and she played Soccer, Basketball, and Volleyball until she was 15 years old. She was also expected to keep up with us on any vacations we went on. We never even considered allowing her to use a wheel chair. She would be a little slower than the rest of us, but she always managed to do what was expected of her.
In 2010, Martina started having fainting spells. We weren’t sure what caused it, but after visiting with the best Cardiologist in England (he was the physician for the Manchester soccer team) we were told she had elongated QT rhythm. Since we were so close to moving back to America, he ordered her to stop all exercise or anything that could elevate her heart rate.
When we got to Abq, we immediately went to see Dr. Waldman at UNM Pediatric Cardiology. Dr. Waldman was able to rule out Elongated QT, but he did discover she had a weak heart. He put her on .5mg of Lisinopril and it seemed like it was helping.
Then Martina went to prom the end of April 2011 and the day after, she was in excruciating pain. She ended up having to be admitted into the hospital for 10 days so that she could be evaluated and treated. While she was in the hospital, she had another muscle biopsy on her leg. The biopsy ended up giving her a completely new diagnosis. Her new diagnosis is Spinal Muscular Atrophy III. We found out that because we forced her to over exert herself when she was younger, her muscles wasted away faster. So basically, because we forced her to play sports, her muscles wasted away faster than they should have. During this hospitalization, Martina fell behind in school.
I was torn as to what to do, because I didn’t want her to have to do an extra year, because it really wasn’t her fault. One day, I called Academy Del Sol in Alamogordo and explained her situation to them. Mrs. Provencher asked us to go to Alamogordo so they could meet Martina. When we went down and meet the staff, they immediately told me they would accept her as a student and the promised she would be able to make up her credits and graduate in May 2012.
Leaving Martina with my parents was the hardest thing I ever had to do in my life. She wasn’t happy about living far from home, but she agreed to go. Martina came home almost every weekend and the car trips started to wear on her. In Jan, her pain had gotten so bad, that she was admitted in UNMH Carrie Tingley hospital. She was in the hospital from 30 Jan until 1 March. She missed more than a month from school and we were really worried that she wouldn’t graduate. It took a LOT of hard work, but she graduated with honors and 15 college credits! Watching her walk across that stage was the proudest moment of my life. Not only because she graduated, but because she WALKED. You see, my baby has been depending on a wheel chair (not every day, but lots of days) since May 2011.
Martina had so many plans this summer, she was supposed to go to NYC and start volunteering, but her pain has been so bad that she hasn’t done anything, except go to Las Cruces to go to Warped tour with her cousin. After she returned from LC, she ended up in bed for more than a week. She has been on narcotics since March. They are supposed to be used for breakthrough pain, but she uses them 24 hours a day because her pain is so bad.
Her pain Dr. has decided that she needs to be treated at the Mayo Clinic in Rochester, Minnesota. I’ve done lots of research and talked to lots of Drs and they all agree that Rochester is the place to go. She will be treated in the pediatric pain clinic and because Allen and I are both expected to go, we will be taking all 4 of the kids with us.
We are going to be doing a few fundraisers to raise money for our trip and month long stay in MN. The first of which will be a car wash on Saturday 11 Aug at the O’Reillys Auto Parts store on San Mateo and Montgomery. We are trying to raise $4000, before we depart in late October or early November. I will create an event for every fundraiser we have. Any support you can give to our family will be greatly appreciated.
