Back to School Teacher Letter

I've attached a copy of the annual letter we give teachers at Madeline's school. I always give a copy to her teachers, school nurse, principal and PE teachers. Hope it helps you. Plagerism welcome! :)


Dear Sixth Grade Teachers:

I wanted this letter to serve as health notice regarding our daughter, Madeline Ducote. Madeline is currently battling a very rare disease called Juvenile Dermatomyositis, or as she calls it JDM. She was diagnosed on March 28, 2008 at 9 years of age.

JDM is a rare autoimmune disease which attacks children of all ages, causing them to suffer from weakened and painful muscles, skin rash that worsens with sun exposure, severe fatigue, digestive problems and a variety of other debilitating symptoms. This disease is very rare as it only affects between 3,000 to 5,000 children currently in the United States. As to date, we have only found one other person in the state of Louisiana battling this illness. Some children may experience a remission, while others will battle JDM their entire life. Madeline has recently completed a 26 month treatment. She is not classified in remission yet, but we are hopeful she will be soon. In June, her physician took her off all of her medications to test her body’s response off all drugs. So far, she has done well.

Madeline’s recent treatment involved taking Cyclosporine A (a medication normally used for transplant patients) and methotraxate (a chemotherapy drug). Combined with her medicine, it is absolutely necessary to keep her protected from the sun. JDM is peculiar in that although Madeline may look good now, having her in the sun unprotected can cause big problems. This is due to her disease, as well as the side effects of her medication.

My husband, Rick, and I request the following guidelines be followed concerning Madeline’s activities while attending class at J.I. Barron Elementary:

1. Madeline is very sensitive to the sun as a result of her dermatomyositis/medications. As a general rule, it is important that she avoid unprotected sun exposure during the times of the day when the sun is at its peak (10:00AM – 4:00 PM). We are aware that Madeline can tolerate minimum sun exposure in the late fall and winter months with proper protection. It is imperative that Madeline wears sunscreen. She will always have sunblock with her and knows how and when she needs to protect herself. She may need to put on sunscreen before recess, and any time before she goes outdoors for long periods of time. Please allow her to go to the bathroom or hallway so she may apply the sun block in privacy. It is necessary to have her sunscreen applied to her face and all exposed areas. I will supply the sunscreen for her to keep in her backpack or your location of choice.
2. Madeline may participate in gym class; in fact exercise is very important for maintaining her muscle strength. My understanding is that from time to time gym class is conducted outdoors. In general, Madeline is permitted to participate in outdoor gym class, but must apply sunscreen prior to going outdoors. I will notify you on those days when Madeline is not feeling well to perform in gym class by sending a note. I do not anticipate this occurrence to happen often if any.
3. Madeline was taking methotrexate, which is an immunosuppressant medication that puts her at increased risk of infection. It is important that I am notified if there are serious infections in the school (i.e. staph, mononucleosis, flu, etc.). Also, she will need to wash her hands and desk more often and will carry hand sanitizer with her at all times. I will also purchase hand sanitizer for your classrooms if that will help you. I can not stress enough the importance of this. What can be a simple cold for you or me can become serious for Madeline. Also, we find it takes her a lot longer to get well.
4. Madeline must visit various physicians throughout the school year which are located in Texas at Texas Children’s Hospital. She may tend to be ill more often. These events will require that she is absent, late or dismissed early. I will keep in touch with you when these events occur in order to coordinate her schoolwork.

Juvenile Dermatomyositis can be a physical illness but does not impact Madeline’s ability to think, feel and participate. You will find that Madeline is like any other child her age in all other respects. She is competitive, somewhat of an over-achiever, a dreamer and a very well-rounded little girl. I am very interested in her mental health as it relates to her disease and ask that you inform me should you detect any concerns in her emotional well being. I value your expertise and welcome your assistance should a concern arise.

One way you can learn more about Madeline’s experiences with this very rare disease is by visiting her blog at www.madelinesjdmstory.blogspot.com. She loves to tell you about her pen pals literally from around the world, in which, she has made from this site. Plus, it will help give you an idea of the path we have taken in these past two years.

Thank you so much for taking the time to attend to this matter. I look forward to the new school year, as does Madeline, and developing a new partnership with each of you.

Sincerely,