Angelica Maria Gallegos “ANGEL” (almost 39 yrs) met her milestones growing up and all seemed normal. She started school and did well in her first couple of years and suddenly her grades dropped.
We never knew why, just thought that she would struggle more than other children. She graduated high school at 17 and started college at 17 but always had to work very hard to maintain grades. She earned two degrees during this struggle with VWM.
It wasn’t until she started showing physical symptoms at age 26 (2004) that we realized something was very wrong. She started to fall, became lethargic, lost her balance easily; her body would bend and couldn’t straighten out. She also never had a regular menstrual cycle and menopaused in her mid twenties due to ovarian failure. This is also a symptom of VWM.
We went to a few different neurologists and was treated for 4–5 years for MS. She continued to get worse and her symptoms no longer mimicked MS. Her neurologist quit on us and told us to take her to a super neurologist. I then took Angel to the Southwestern Medical Research Center in Dallas and after months and TONS of testing they told me “she does not have MS and we don’t know what she has”.
They did however refer me to Dr. Juan Pascual who knew about VWM. He turned out to be the doctor that did the genetic testing to confirm his suspicions of VWM.
I was devastated when we met to get the results (took 3 months) and he explained the rarity of this disease especially in adults. He told us that he only knew of 13 cases (at that time) and that there was no cure. He told me to take her home, make her comfortable, spoil her and cherish my time with her. That was 2009.
I wasn’t sure I was hearing right so I asked, “Is this a fatal disease” and his answer was yes. I’m not too sure what else was said after that but Angel quipped back, “I should have bought a lottery ticket” because of the odds of getting VWM.
She told me on the way home that she was happy to take this illness on as long as her brothers didn’t. She mentioned that one brother had 3 children that needed him and the other was so young that his life was just beginning and she had no children.
She has faced this terrible disease with courage and grace. She has had so many hospital stays but always remains positive with a great attitude. She never complains or has pity parties. She has to use a wheelchair or walker at times and wears braces always but it doesn’t stop her. She wants to help everyone.
With all these children that are facing this disease, she told me yesterday that she is an organ donor but wants to donate her brain as well when she earns her wings.
Angel is our inspiration; she works hard and never gives up. I wish I had her strength — she makes me proud.
Vanishing White Matter disease (VWM)is under the umbrella of Leukodystrophy. Since it is so rare there are no public research funds for this disease. The only funds are those raised by the families trying to save their children. This afflicts mostly children. There are very few adults with this disease because the children don’t make it into adulthood.
Do what you can, when you can. Share Angel’s story. Share this post. Help a family you might know or simply talk about it with friends. Kids — of all ages — need our help.
Written by Angelica’s mom.