What I’m raising money for this year is near and dear to my heart. A Better Life for Xander! Living with Stiff Person Syndrome (a very rare disease for children), and Type 1 Diabetes.
Link in my bio under website blog
Xander has had some wins, we finally got a tele-health appt. with Dr. Piquet, one of the top SPS specialists in the world and Celine Dion’s doctor.
We do have some new specialists added to the already large group…Neurologist for SPS, Endocrinologist for Hashimoto and Type 1 Diabetes, GI Dr for chronic pain in his stomach, Pain Management clinic to manage the pain ( that’s a new one), Scoliosis specialist, Ortho for Hip replacement, Functional medicine doctor to help with supplements, food habits and root causes. A few more but my head is spinning. IVIG every month for 8 hour infusions in perpetuity.
His fabulous therapists, shout out, are not covered by insurance as well as all the travel and gas to St. Pete’s several times a month.
Any support is much appreciated. Thank you for the best birthday gift I can receive, supporting my kid. 🥳🎉⭐️
We are so close to our goals. Help us, help Xander for a better life.