Today, I'm spreading the word for a fellow food-allergy family whose daughter also has leukodystrophy (an MS-type condition in children).
No doubt---food allergy diagnoses change the lives of entire families. But I can't always get worked up into true advocacy or even tiger mom mode, because I know first hand how much worse life is for so many others with poor health. Growing up with allergies bad enough to miss nearly 40 days of school and a congenital heart problem, I learned the mantra (my mom's) that "someone else has it worse" very early. Blunt, but it gives you perspective (and stops a kid from whining) pretty quickly.
Just within my own neighborhood circle, two other kids on the block have food allergies similar to my daughter's...but one, Ellie, also has a serious rare genetic disease called leukodystrophy, which has MS-like symptoms in kids. Food allergies are still a huge concern for her family, but they fall within the greater context of keeping her walking and attending school and playdates for as long as possible.
Ellie's family has pulled off some amazing advocacy for the leukodystrophy cause, and a special institute at Johns Hopkins is about to embark on clinical animal studies to find a treatment and possible cure for her and others like her.
Check out the example of her family's newsletter with research updates, below, and her advocacy website at acureforellie.org. Advocacy, for allergies or any health condition, really does make a difference---to patients who are able to connect globally now more than ever, to researchers who seek funding support, and to communities, which pull together to support faces they associate with different conditions.
We would be lost without the strong support we have from our community to keep our daughter safe from food allergy reactions. I know that Ellie's family appreciate this same community for all of their efforts to help Ellie, both by raising funds and by making sure that she experiences a lot of love and fun.
It's not always easy to say that life, in particular your child's health, isn't perfect. But don't forget to speak up, even just locally, about your family's allergies or other needs; you will gain a lot from sharing, and you never know when other families you might meet could use a hand from you.
Here's an excerpt from the family's latest newsletter to supporters of leukodystrophy research at the Kennedy Krieger Institute (KKI) in Baltimore:
"First, we want to make sure to thank you for the incredible outpouring of support we have received already this year. After our last update in February, many of you gernrously donated to Ellie's research project at the Kennedy Krieger Institute and many others signed up for the April 23 Fairlington 5K which is now right around the corner.
A lot has happened since February, so we thought it was time for a quick update...
I never thought I would be so happy to say these three words, but... "We have mice!" That's right - the mice with Ellie's genetic mutation arrived from Germany into Baltimore on March 15 and the research at KKI begins very, very soon! We recently had the opportunity to meet two of the bright, young researchers who will be working on the nano-technology effort. They are pictured below with Ellie. Their names are Ben and Christina, and they couldn't have been nicer."
In the link below, you can read more about the coming research and find links to Ellie's own web page at the KKI, which hosts a donation site for research to save children with conditions like hers all across the globe.
Hi, I'm Nicole.
ABOUT THE BLOG
An apothecary is a person or a place. Either one implies healing and relates to pharmacy in its truest sense, as a source of treatment and advice.
This blog is my way of uniting my pharmacy training with my efforts to provide a healthy and safe lifestyle for my family. In true apothecary form, I research and prescribe alternative ingredients that work just right in each specific recipe, and I would like to share the results with anyone who needs help making their own family’s kitchen allergy safe and heart healthy.
I made the 2017 Top-40 Food Allergy blogs!
Nicole Van Hoey's books on Goodreads
Bakery Bites: Breads and Treats Without Dairy, Eggs, Nuts, Seeds, or Soy
ratings: 1 (avg rating 5.00)
Kitchen Adventures With Multiple Food Allergies: A Recipe Collection for Celebrations Without Dairy, Eggs, Peanuts, Tree Nuts, Seeds, or Soy