UX/Motion Designer and Allovus employee Fes Naqvi is on a mission—and to complete the mission, he needs your help! He is running in Seattle’s Rock ’n Roll Marathon on June 13th to raise money for a very important cause.
You see, Fes and his wife, Chris, have an adorable little girl, Farah (her name means joy in Arabic) and she was born with a condition called Epidermolysis Bullosa (EB for short).
EB is a rare (1 in 30,000 to 50,000) genetic disorder of the skin that makes it susceptible to tearing, blisters and infection. It’s the absence of keratin or collagen in the skin that causes it to bond—and upon touch, friction or injury, causes it to blister and tear.
Within 10 hours of her birth, the doctors realized something was wrong and alerted Fes and Chris. Her skin was red and blistering. Because of its rarity, the staff at Swedish First Hill had never seen or dealt with the condition before. Farah remained in the NICU for over two weeks before coming home.
“We had to learn how to do wound care under supervision before the hospital would release her,” Fes said. “Since her birth, we’ve had to work with a variety of providers, ranging from her primary doctor, a dermatologist, pain management specialist, wound care specialist, physical therapist, occupational therapist and others.”
As for EB, there is no cure. The treatment includes long term pain management and wound care. “We have to pop blisters, put antibiotic cream on them, and then it starts crusting over. That’s when the itching begins—it’s constant. It’s like chicken pox times 10,” Fes remarked.
Fast forward 2 ½ years. Farah is now a spunky toddler who rules the roost at home. “She’s not a princess, she’s a queen—the benevolent dictator of our household,” Fes mused. “Cognitively, she’s ahead of her peers, but physically, she’s just now started to walk.” The bandaging on her feet delayed her mobility, but she’s now gotten to a point where her limbs don’t have to be wrapped up all day. “We’ve done three dressing changes a week since her birth, which take 3 to 4 hours for each one—these are preceded by a diluted vinegar bath or a diluted bleach bath to kill off infections. There’s no wrapping on her anymore. She’s very strong—she’ll be my snowboarding buddy when she grows up.”
Fes is running in the Seattle Rock ‘n Roll Marathon to raise money for EB research. “The charity we are running for, EB Research Partnership, was founded by the Silver and Fullmer families. Also actively involved are Jill and Eddie Vedder (yes, the Eddie Vedder of Pearl Jam fame), who have held fundraisers for this cause on the Microsoft campus.
Here’s how you can help. Follow this link to Fes’s page where you can quickly and easily make a donation. Every dollar counts! Then share on social media platform(s) to get more folks involved and donating.
Learn more about EB
EB Research Partnership – http://www.ebresearch.org
DEBRA – The Dystrophic Epidermolysis Bullosa Research Association of America (they’re actually a global org) – http://www.debra.org
More info on Epidermolysis Bullosa – http://www.ebnurse.org
Seattle Rock ‘N’ Roll Marathon –http://www.runrocknroll.com/seattle/
I really don’t know what to say. Collectively, #TeamEBRP raised not only a lot of awareness for Epidermolysis Bullosa but also a grand total of $18,066 that will help fund research to #CureEB and help #CauseTheWave.
Thank you all that supported all of us and/or gave funds and when you couldn’t, you shared.
This was a mission near and dear to all our hearts that were, are and will continue to be involved in the cause. I walked away at the end of this weekend with friendships and connections with families and invididuals that have love and care for those afflicted with EB or have EB themselves. These families and individuals are very strong, physically and mentally and are fighters, whether or not, they’ve been personally affected by it and no words can describe the amount of respect and admiration I have for them.
In the end, I don’t really hate running anymore and I’ll continue this fight and this campaign as long as there’s somebody afflicted by it.
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