Investigations as to whether or not the diseases both girls' have could be linked genetically is underway.

This family has endured more than any family should need to! Their battle in finding medical care for their daughter's has been nothing but one disappointment after another. It seems this family is pushed from one doctor to another. They have tried every avenue possible and still they are receiving no help! The Shriner's were contacted in January 2007. A Shriner's Clinic was held in Phoenix on Feb. 3rd, which the family attended for Annika (they were advised they could not aid Ceianne in any way). Of course...the doctors were baffled as to what the problem could be with Annika but agreed that she needed to be seen at their hospital in Los Angeles. At this time they were waiting on results of medical tests that had been performed by the pediatric neurologist Annika had been seeing. Once those results were back the Shriner's had plan to fly the family to LA and would be consulting with a neurologist at Cedars Sinai. As the family waited for their date of departure Annika continued to worsen. She had extreme pain set in during the next few weeks. Not sure exactly why she was having such extreme pain (to the point she was screaming and flailing around) the family contacted the pediatric neurologist (which seemed like the logical choice). After many messages explaining the situation a phone call was finally received at 5pm that day (messages were left from early that morning). At that time the neuro explained that he didn't know what to do for Annika and the family should contact their family doctor....AT 5PM!!!! So, luckily the family doctor was able to be paged and although the family doctor felt this should have been done by the neuro, she called in pain relief for Annika. Tylenol 3 with codene every 4 hours and Neurontin were prescribed. This was to be a temporary form of pain relief for Annika as the trip to LA was to take place within the week! A call from the LA Shriner's hospital came in, the family expecting a date of departure. Instead, the family was told that the doctors at the LA hospital decided they could not contribute to Annika's case and had no idea where she should be taken next. So, the family now had a daughter who was temporarily being medicated and no where to go with her! They stated that the recommendation of the pediatric neurologist she had been seeing was to put her on certain drugs and begin physical therapy (something all the other doctors Annika had seen highly disagreed with....they stated that physical therapy could NOT begin until they knew WHY this was happening to her.). So, this was a devastating blow to the family. MANY messages to the pediatric neurologist were left without one return call! This family had no idea what to do next. Upon relaying this news to their family doctor they decided they had to try to get Annika off the Tylenol 3 with codene for fear of her becoming dependent on it! Over the time of a week or so they tried many different ways to do this....none of which were working. Finally, the idea to increase the Neurontin in place of the Tylenol 3 came about and is the only thing that has worked. Annika was taking 2400 mg of Neurontin per day to keep her pain manageable! She now takes 150mg of Lyrica (and has fewer side effects than when she was on the Neurontin). To date there has been NO contact from the pediatric neurologist. It even took a phone call from the family doctor just to get Annika's records! This was very disheartening as the pediatric neurologist this family chose is involved with a very well known children's hospital in Phoenix! During the time they were trying to get Annika's pain managed the family went on a search for someone who could help her. They called University Medical (which had a neuromuscular doctor but they couldn't see her for a month), the MDA (they couldn't help them because Annika didn't fit into any of their 'categories' as far as her symptoms were concerned), the Barrows Neurological Institute (which to date has yet to call the family back), and a number of other doctors throughout Phoenix and Tucson (all of which either stated they didn't feel they could help her or didn't have any available appointments for months). This family was devastated....not only were they having to watch their daughter continue to decline but now had no where to take her! The other concern for the family doctor was whether or not it was ok to keep Annika on the high dose of Neurontin (she now takes Lyrica so this is no longer an issue). At this point the family doctor decided maybe the family needed to go back East. Over the next few days this doctor devoted a LOT of time into trying to find a pediatric neurologist in the New York area. During this time, the family continued to call hospitals/doctors around the country to see if anyone could, or would, help! It just so happens that the doctor that was contacted in New York (by the family doctor) referred her to the Mayo Clinic in Rochester, Minnesota. The family doctor made contact with the neurologist at the Clinic and she agreed to take on Annika's case! The strange part about this is that the very same day, the family had made contact with the Mayo Clinic in Rochester! At this point the family had a doctor lined up who agreed to take on Annika's case, all that was left to do was deal with insurance. Upon contacting their insurance company to ensure they would be covered more devastating news was delivered. As of April 1, 2007 the Mayo Clinic/Physicians would no longer be covered by the insurance plan! The family requested an 'out of network referral' and were denied on March 12, 2007. So, now this family will have to endure the cost of taking their child to a clinic in another state without the help of the insurance company. On March 23rd the family received some very exciting news. After Dr. Tilben appealed the decision of the insurance company it was decided that the company would indeed be granting the out of network referral! The family will still be faced with a tremendous amount of financial responsibility but this was a great development! Ceianne's referral is still currently 'denied'!

As you can see, this family has had to endure much more than they should have. The doctors seem to cut the family off as soon as they feel they can't contribute anymore and don't seem to care that this child continues to get worse! The ONLY doctor that has stood by this family was their family doctor! They are extremely grateful to Dr. Barbara Tilben (Desert Saguaro Medical Associates) for all her help! Without this ONE doctor this family would have been on their own. Dr. Tilben contacted the family's insurance company and explained the situation on numerous occasions, but it has made no difference in their eyes as far as Ceianne is concerned. Some help has been brought forth by Senator John McCain who has helped us get in touch with the Dept. of Insurance. They are currently investigating our case for Ceianne!

Ceianne's situation is similar. Ceianne's disease is something very rare and most doctors have never even heard of it. The family knew it would be difficult to find a doctor locally that could help them with her, but...kept trying. Of all the physicians Ceianne has seen not one had enough knowledge about Erythromelalgia to help her at all! The family did find one clinic that is known in the testing/treatment of Erythromelalgia....the Mayo Clinic in Rochester, MN! It almost seemed like fate to the family that not only was this the only clinic that could help Ceianne....it was also the only clinic that agreed to help Annika! Of course, the family was already informed of the insurance situation but with Ceianne's medical condition worsening, knew they had to find a way to get her help as well!

Having one child needing out of state medical care is more than enough for one family to be faced with...having two is far too much! We are going out into the community asking for help in aiding this family with the funds necessary to get both girls the medical attention they so desperatly need. We also felt that with all this family endured their story needed to be told. People don't understand how difficult it is to get the necessary help for a child with an unexplainable disease!

Each girl has her own website that is maintained by their mother. Links to those sites will be at the end of this letter!

To visit the websites please go to: