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For the fourth year in a row, Hope for HIE held 10 Days of Giveaways, where families can enter drawings for giveaways ranging from equipment to gift cards.
Through these giveaways, we hope to make life a little easier for our families affected by HIE. This year, we were able to give 44 families a little extra HOPE for the holidays!
Our giveaways included Roombas, Firefly equipment, a date night in, registrations for this year’s mom retreat in Florida, switch-adapted toys, an InstantPot or Air Fryer, a Kinderpark, a copy of Rising Strong by Brene Brown, or Starbucks gift cards.
These giveaways are just one of the ways Hope for HIE supports families worldwide with the donations receive from donors all over. That money is used to promote education and awareness of HIE, and also to support families affected by HIE.
Meet some of our winners, and hear what Hope for HIE means to them:
“Hope for HIE is the community I never knew existed, never knew I needed, but now I don’t know what I would do without it. It is made up of some of the strongest and most inspiring families who have taught me that it is ok to cry and ok to laugh. It is the one place I can go where I know I will be understood and supported. This journey would be a whole lot harder without HOPE for HIE,” said Naomi, from Chicago, who won a date-night-in.
“Hope for HIE has provided me a support system I did not know existed. Prior to Hope for HIE, I was in a few random groups that somewhat coorelated with my child’s diagnosis but it was never really a fit. Hope for HIE has connected so many families. I have true life long friends due to these connections. It’s an organization that truly goes above and beyond for its members,” said Alison, from Pennsylvania, who won a Starbucks gift card.
“Everything. In our parent forum, we share our kids, we feel normal, we don’t feel alone, and we find support and answers to the most important questions in our lives,” said Gaby, from Canada, who won a date night-in.
“It means family. It means support, community & encouragement. It means I am not alone in this journey. A journey I knew nothing about, a journey and way of life that I didn’t even know existed until the Doctor told me: ‘Your son has Severe HIE, grade 3.’ What’s HIE? What does that mean? What will my son’s life look like? Can I do this? These and so many more questions flooded my mind when I heard those words come out of the doctor’s mouth. My world stopped. I can remember feeling like the walls were closing in on me, that I couldn’t breathe, that I was drowning and everyone around me did nothing. I slipped into the deep, dark hole of HOPELESSNESS. I would sit by his crib in the NICU, watching him fighting to live and I would weep. Weeping for everything I had ‘planned’ for him before he came into this world, weeping for the life I thought he would have. I remember feeling so alone, so isolated and that no one ‘got it.’ No one understood how I was feeling as Sawyer’s mother, no one understood what I was going through. The doctors continually told me how ‘rare’ our situation was and that they had never seen something like this … which didn’t help me to feel any less alone, or abnormal, or hopeless. Until the day I found Hope for HIE. That is the day I felt like I was rescued in a way. I was drowning and this group was the hand that reached out and helped me get my head above water, helped me to breathe again. I remember looking at numerous posts from mothers and fathers about their precious children of all ages. Seeing the children’s smiling faces, seeing how loved that individual was, seeing that there were other families that have gone through what I was going through and that they were in fact thriving, surviving and living their lives, happily. I decided to post about my son, Sawyer in the group. I had so many questions, worries and concerns. To be honest, I didn’t know what to say, all I knew is that I was desperate for help, support … anything. I remember after I wrote his post I was floored by the outpouring of love, support, compassion and encouragement that this group gave us. It was through reading their words of encouragement and them sharing pictures of their children that I felt something change deep inside my soul. As I read through their comments, I could feel the darkness around me getting a little lighter and the weight getting a little less heavy. It was HOPE. A tiny spark of HOPE started to form inside me, seeing and hearing that I wasn’t alone in this journey, that my Sawyer wasn’t as ‘rare and abnormal’ as the doctors kept telling me. I found my people, my community, my family. People who ‘get it,’ people who have been in my shoes, people who have heard doctors telling them their child can’t and won’t do certain things, people who rejoice with me when my child accomplishes something ʺlittleʺ because they know that that ʺlittleʺ accomplishment is, in fact, a HUGE accomplishment because they know exactly how much time, tears, heartbreak and hard work went into achieving that ʺlittleʺ accomplishment. This group means so much to me, this group saved me, truly. This group gave me HOPE when I had none. This group has taught me to NEVER give up HOPE. Thank you from the bottom of my heart for this incredible group of people and all of their support, compassion and encouragement through the years and the many more to come,” said Desiree, of Minnesota, who won a date-night-in.
“Hope for HIE means to have my team. To have people from all over the world I’ve never met, and yet feel such a closeness with. To have someone just ‘get it.’ To pass someone in a specialty appointment and know they have the same diagnosis and just feel a sense of understanding. To know that no matter where I go in life, I have this new way of understanding, compassion and love that very few understand. To know even when I feel weak I have a network of people to reach out to. Without this forum, my life would have been so different. I’ve learned from other parents, struggled with others and rejoiced in the upside of things. HIE is not just something that happened, his injury changed my life in so many ways but has helped me into this beautiful person I’ve become,” said Katie, of Washington, who won a Firefly Splashy.
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