The Newsletter of
Our Swan is disjoined like many families of children who have a
Syndrome Without A Name
Help us make the connection
Summer 2005 Issue #3

Our Children's Doctors

 Many of us have way too many doctors to deal with, for our children. This can be very hard to deal with over the years. I'm sure all of us have had or will have a not so good experience with one or many doctors. Some of us have felt angry, frustrated, and confused about the things that we have encountered with doctors.

Sometimes we are told information about our child's future and what it will or will not be. Some may not want to know and others may want to know what the doctors believe their child's future will be. But do they really know? I don't believe anyone can tell what any child's future will be like. So often our children achieve so much more than what we were told. We should continue our hopes and dreams, though they just might change overtime.

Sometimes we are not told very important information, which could help us in understanding or even help our children's outcome. Some families didn't know certain things were determined for their child until they viewed the records themselves. We have the right to any and all information about our children or even ourselves.

These are only a few of many things that have occurred to families. How or Should we get past the situation. In some situations we may need to take action by getting a lawyer, writing to the medical board or finding a new doctor. In other situations we may just need to get a better understanding of the issues.

To help us understand we should recognize that no one person in the world is the same as another. Doctors will have a different approach to the same issues. We may see one doctor who uses gentle words and another who may use abrasive words.  Some words said should be understood as only that doctor's view. Some will be aggressive in their investigation and others will be laid back. We should seek a second opinion if we feel it is necessary. People often see doctors as all mighty, but in reality they are only human. They can't possibly know everything, do to the fact that all cases differ so greatly. We should trust our gut and take time if possible to investigate what is being said or done to our children.

Seeing doctors with different views and approaches adds to the difficulty in making a diagnosis for our children.  Different doctors may have all different opinions on the same symptoms. As we build our community we will bring doctors together on the undiagnosed conditions and improve the likelihood of making a diagnosis.

Let's join together and be heard. We as parents, families and friends have more power than we realize.

          Your Friend,

         Amy Clugston



I welcome you all to add your stories, pictures, worries and such.

 Our Zoo Get together

      Some families in our e-mail group had talked about getting together. We were to meet at Binder Park Zoo near Battle Creek Michigan. When the day came, only 2 families were able to actually make it. We would have loved seeing others, though it was great with just the 2 families. There was a total of 11 of us, One family was Michelle, her husband Mike, his brother Tom and their 3 girls Stephanie, Nicole, and Danielle and the other family was mine (Amy), my husband John and our 3 kids Lorna, Jadon and Cloey.

      There were lots to see and do at the zoo. We enjoyed a relaxing ride on the tram to Wild Africa. Michelle's girls enjoyed feeding the giraffes as my children kept their distance. A baby monkey was born a week before our visit, it was hard to see as the mother was sheltering it. We finally sat and had lunch after our long walk through Wild Africa. Later we explored the petting zoo and the dinosaur land. We were fortunate to have a beautiful day with no rain, not too hot and not too cold. We look forward to having another wonderful get together and hope many more will join us. 





Super Duper Publications

It seems we are always looking for items that our kids will enjoy and at the same time be a type of therapy. This Company offers lots of items that our kids will enjoy. They have items that will help with Auditory Processing, speech, and other basic skills. They also offer free shipping to the USA and Canada. Geet a free catalog through their site, phone or mailing.

Super Duper Publication
                 P.O. Box 24997
                 Greenville, SC 29616
                 1 800 277 8737

Genetic Alliance

      We are now members of the genetic Alliance. The Genetic Alliance is an international coalition of more than 600 advocacy, research and healthcare organizations. They all represent millions of individuals with genetic conditions and their interests.
                 Genetic Alliance
                 4301 Connecticut Ave NW
                 Suite 404
                 Washington, DC 20008-2389
                 202 966 5557

Genetic and Rare Disorder
Information Center

      The Genetic and Rare Disorder Information Center has contacted me to find out what we offer to families. They will now be sending any inquiries they receive about undiagnosed situations, to SWAN USA. 
                 The Genetic and Rare Disorder
                 Information Center
                 P.O. Box 8126
                 Gaithersburg, MD 20898-8125
                 800 205 2311
NEW Link

Swan USA State
      I will continually be looking for Swan State Helpers. Below is a list of things we will need these helpers for. This could be one person or many to divide tasks up. One doesn't need to do all of these; each of the areas will differ.
  1. Help getting the word out, by sending information to genetic counselors and families.
  2. Be a contact person for families in your State or Region.
  3. Possibly send inserts in the newsletters with state or regional resources and such.
  4. When we have enough swan families, we may need support group organizers for different areas
  5. Be in a support system with other state helpers.

Together we will build our community.

SWAN State Contacts

Michigan - Amy Clugston

California - Annette Humphreys

Illinois - Jen Zahm

New York - Sheila Hayes

Wisconsin - Bridgette & Bryan Shriek






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