Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease

The Spoonie Struggle

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3+ y ago 1:11:48

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Episode 17: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease

In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud’s and dermatomyositis. Sadie’s triggers are exposure to viruses, sunlight, and certain foods. They determined her triggers through trial and error. Her daughter, Sadie, started showing signs of her condition at 18 months. She started showing trunk rashes, stopped being able to walk, not eating much due to jaw pain, wouldn’t hold a spoon or pencil, and ate with her fingers. Dawn tried to find a diagnosis for her, but the doctors didn’t think she needed to get testing for Sadie. Eventually, she couldn’t move or get off the floor. She was told that she was just a worried first time mom, was told that she was putting her child through horrible tests for herself and not her child. She had to research things on the internet to find a proper doctor, and then Sadie was properly tested to find her actual diagnoses. Dawn recommends listening to your parenting instincts.

To help Sadie, they tried a lot of different treatments, including medications, shots, IVIG, infusions, anti-inflammatory diets, chiropractic, and acupuncture. It took a lot of time and treatments for Sadie to be able to be more independent with activities, physically. Due to discrimination from others, Dawn and Sadie decided to do homeschooling, which has worked very well for Sadie. Dawn heard so many stories of teacher’s discrimination against children with chronic illnesses. Sadie did a lot of co-ops to help with school. Although Dawn didn’t want Sadie to have to use a wheelchair, Sadie greatly increased her independence and abilities when using a wheelchair, so she started using one.

Dawn recommends making family a priority. Sadie prioritizes her energy and plans in down time or recovery time for afterward. Dawn has advocated for Sadie by standing up for her, getting involved in foundations, teaching Sadie to follow her internal voice, and giving up expectations others put on her. Sadie has found kind and empathetic friends who are really compassionate. Dawn taught Sadie how to stand up for herself. They use video chats to help Sadie be social when she doesn’t feel well enough to get together in person. Sadie is finally in a place where her condition is very stable.

Dawn uses social supports by talking with other medical moms and running a charity. To advocate for yourself, never give up, and don’t search for advice from people who haven’t been through it because they won’t understand.

Chronic Warriors Org

Chronic Warrior Collective

Body Check Journal

Instagram Dawn

Instagram Chronic Warriors Collective

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Hosted by: Jessica Temple

Music by Antarcticbreeze Music

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment.

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