In 2005 Tiffany was signed up for the local towns Steel Days kids race, however she could not finish the race and got very tired. We think this is when her troubles were just beginning. She was in a gymnastics class in the spring of 2005 and did so well with the students her age that the gymnastics teacher wanted to put her into a more advanced class. We signed her up for fall gymnastics but the teacher noticed that she couldn’t do some of the things she was doing just the spring before. In a preschool class the teacher noticed that she was having trouble keeping up with the other kids, especially when they went on field trips. In the late fall of 2005 we noticed she started walking funny and would fall down sometimes.

We started with the local doctors, trying to figure out what was happening to our daughter. The first diagnosis was that it looked like muscular dystrophy (we were devastated). They ran CAT scans, MRI, blood draws, etc. It was determined that we needed to see a specialist so we were sent to Primary Children’s Hospital. They ran additional tests for Multiple Sclerosis, Cerebral Palsy and other things and came up with Gillian Bare Syndrome. This is a nerve disorder that affects the myelin sheath around the peripheral nerves. She was treated with steroids and we were told that within a few months she would probably get better (we were elated), this was great news. We kept in close contact with the doctors and could see that they were confused as to why she wasn’t getting better. They conducted another nerve conduction study while she was awake with her mom holding her, this was a very difficult thing for us to sit thru but we just wanted to get our daughter better. They put probes at the top of her legs and send electric shocks while they watch the monitor and see what the nerves where doing. Though this was a difficult thing to sit through we learned just what a special child we have. While the test was being conducted she told the doctor she hated her and why was she doing this to her. When it was all over she felt bad for what she said and told the doctor that she loves her and knows she is just trying to help her get better. At this point more blood work was done, urine samples tested as well as a stool sample. She was tested for Polio, West Nile Virus, and Lou Gehrig’s disease, and Spinal Muscular Atrophy, rare forms of MD, MS and hereditary nerve disorders. Some of these tests had to be conducted in other parts of the country at different university’s and hospitals. We soon found out that insurance won’t cover some of the tests when they are out of the state and we don’t really have a diagnosis.

All of these tests came back negative. This is a call that no parents wants to get. The head neurologist from Primary Children’s Hospital called and left a message that all the tests came back negative and that our daughter has something so rare that they don’t even know what to test for at this point and to check back in a few months (once again we went from some hope of a diagnosis to being devastated). In the mean time, Tiffany was still walking with the use of braces on her legs (because she has drop foot, cannot lift her feet up) but she was having more and more difficulties. We were sent over to the University of Utah to the neurology doctor there who ran several more tests. It was thought that she had a hereditary nerve disorder called CMT, or CIDP. She was tested for these things and the test came back negative, especially the bad ones we were relieved but still don’t know what she has or what to do about it.

We had a friend refer us to a doctor in Provo, Dr. Remington a wonderful man who thought he could help. He ran some test and determined the possibility of Lyme disease. We started treatment for Lyme and didn’t have much success. We did some research on Lyme and found a world renowned pediatric Lyme specialist in Connecticut. He thought he could help and we started treatment with some antibiotics that were very expensive and once again insurance did not want to pay for the doctor or the medicine because Lyme disease in its chronic form is hard to detect and the treatment process is controversial. We went back to Dr. Jones last August and were very discouraged to find out from him that it didn’t appear to be Lyme because she wasn’t getting better and had actually gone downhill quite a bit. Dr. Jones sent us back to Primary Children’s, after having read all the testing they had done and said to have them check all the forms of SMA and whatever else they could think of. We have done so and once again all tests came back negative.

We have found a physical and mental therapist that is helping us now but we are running out of resources, and aren’t sure where to turn. The general consensus is that Tiffany’s peripheral nerves are being effected which in turn have caused her muscles in her legs, arms, feet, hands, torso, and back to atrophy. She has difficulty lifting her arms or holding things. She can sit ok but if she leans too far forward she will fall and can’t get up.

Her legs are too weak to support her anymore and she needs help turning over in bed at night. She is sharp as a tack and enjoys school where she has made a lot of friends (most of them came to her concert). She can feel things and is very ticklish, especially on her neck. One of her favorite games is Hide-and-Seek. She likes to have the covers pulled over her head and then call to us to find her. Her mother has been hired as an aid to help her at school. Valerie is a wonderful mother and takes such good care of her as well as her husband and family. We have 5 other beautiful children and one son-in-law plus a new addition on the way. We are going to be grandparents in January, we are so excited and so is Tiffany. She is going to be an aunt. Tiffany just turned 7 on September 19, 2007. She has always wanted a little pink Corvette. She can’t drive it because she is too weak but her sister and her cousin’s fight over who gets to take her for a ride. Tiffany loves life and never complains about her ailments. We could all take a page out of her book. She truly lifts us up, and she is the one small voice who can make a difference.

We have been shown so much love by our family, friends and our community. It has truly been overwhelming to see the support and hear of the prayers offered in our behalf. We want to thank all of you for your support and love. Tiffany believes that she is going to get better. She said, “Don’t worry Heavenly Father will make me better” when she catches her Mom or Dad crying. She has great faith and so much love to offer. I know that those who attended Tiffany’s concert were blessed by a wonderful heartfelt concert. I hope that we can all learn and grow from these experiences, and remember at the end of the day dealing with all the troubles that come our way is what is important in life. We can all learn a valuable lesson from Tiffany.

We have not given up on her but are not sure where to turn. If anyone knows of someone with similar symptoms or knows a good hospital or doctor that can help please let us know. We have set up a trust fund in Tiffany’s name at the Bank of American Fork (Funds for Tiffany). Thank you for your donations at the concert. It will go into this fund and help us pay some of the medical bills and hopefully find a diagnosis and a cure.

Thank you so much Love,
Scott, Valerie and family

Please visit us at: http://www.helptiffany.org