I thought
this was a sweet email that Tessa’s teacher (Mrs Leary) sent out to all the
other families in her school. What a
blessing to have so many loving teachers and friends all around us!
Tessa
Larsen (Dragon) was just diagnosed with a disease known as Juvenile Dermatomyostitis or JDM. This disease has nothing to do with Tessa’s Turner’s
Syndrome. It is a noncontagious disease that affects the muscles and skin. It is
not very well understood. We suggest that you visit this website for more
information: http://www.mayoclinic.com/health/dermatomyositis/DS00335
For our
part at The Wonder Center, we will assist and support Tessa to our best ability
when she is with us, and on her days resting at home.
A
conversation that we will have with the children at the center, and one which
we think that you need to have at home, will cover several points.
- Tessa has “ouchy” arms and legs that make it difficult for her to walk and sit comfortably. As her friends and teachers, we need to understand when she is feeling pain and be very gentle around her body.
- Sometimes, Mrs. Leary gets to carry Tessa up and down the stairs because she needs special help right now.
- Tessa is going to be taking some very strong medicine (“Steroids”) which will make her look a little different, and a little puffier. After she is done taking the medicine, she will be back to looking just like Tessa!
This
video features another JDM patient also known as Tessa. You can watch this with
your child to help them understand some of the changes that our Tessa will be
going through.
