Salim is a joyful, loving little boy who is full of life. He was born in India in July of 2014 and spent the first 3.5 years of his life in an orphanage there. In March of 2018, I finally got to go bring my little boy home and complete his adoption, and we now live in North Carolina together. Salim has Recessive Dystrophic EB, or RDEB. It ravages not only the skin we can see, but his insides as well. No part of him is safe from this monster.
Wound care is extensive. Salim is wrapped in bandages from neck to toe and we change them all daily. If we skip a day, which sometimes is necessary for his (and my own) rest and mental health, he pays a price with new, bigger wounds and a higher risk of infection. Salim's care consists of full baths and bandage changes daily, tube feeds and countless medications, speech, OT and PT weekly, training nurses, researching and advocating for services, fighting insurance, traveling out of state for doctors appointments and surgeries, educating local doctors, ordering bandages and medical supplies...the list goes on and on. EB steals a lot of our time and money, but we will never let it steal our joy. We do our best daily to live with and in spite of EB.
Every day I wake up before the sun rises to start off our day's fight against EB. I do my best to show Salim strength and bravery, even though he is far stronger and braver than I will ever be. The only way that I'm able to summon all that I am is both because of my immense love for my son and because I cling to the hope that EBRP provides us...hope for a cure. I read medical journal articles, scour clinical trials, watch talks given by scientists and researchers - so many of whom are funded by the generous donors of EBRP - and I am renewed with confidence and pride. We are so grateful for the collaborative, innovative, out-of-the-box thinking and researching that EBRP funds. It is one reason that I am able to wake up each day, knowing the challenges ahead. We know that one day, thanks to passionate researchers and advocates, as well as generous donors, this beast that is EB will be no more.
-Laura, Salim's Mom