A rare neurological disease Xander was diagnosed with June 2024. He was diagnosed in 2017 with Type 1 diabetes at age four. These extreme Autoimmune diseases tend to come in clusters now. This last year and a half have been some of the hardest for our family.
Navigating a very rare disease where they don’t have specialist to treat kids only adults. You realize there are many “Orphan Diseases” that get no attention, funding or research.
Now that hormones are peaking both diseases are over active and harder to manage. We use food as medicine the best we can and have made small and slow changes to remove certain items and add others. We also added exercise everyday on any level to move his body. I’m up 1-2 times a night every night and my husband helps but it’s like having a newborn.
The diabetes gets activated at hormone hours 3am and 6am and the drs have said you can pour insulin all over them at this age and sometimes it doesn’t help.
Xander can manage his diabetes during the day no problem but night time with the meds he takes for SPS, he doesn’t wake up as easy when his glucose monitor alarm goes off with a low or high blood sugar.
He ended up the ICU in February because of this issue. The first time ever in 8 plus years with T1D.
We see 4 or more specialist every few months because of all the complications with these diseases. Scoliosis, hip dysplasia, dysmotility, Hashimoto, and Type 1 Diabetes. IVIG is a treatment for many autoimmune, it’s supposed to slow the progress of the SPS disease since there is no cure and it’s a degenerative, progressive disease.
We have a Go Fund Me for Xander for anything insurance doesn’t cover which is a lot of things in this case. If you feel moved to donate we appreciate anything you can give.