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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Peer Support Mentors

Our positive power is in our people, bringing together families, clinicians, researchers, and the global community.

Our 1:1 Peer Support Mentorship program is built upon the foundation of respecting and valuing all unique experiences within the HIE community. Our mentors are not only trauma-trained and led by our licensed medical social worker, Haley, but they are also integral and diverse members of our HIE community, drawing from their own HIE experiences and offering support, comfort, and guidance to families along this complex journey.

We are committed to expanding our mentorship program to meet the diverse needs of our families. Whether you’re a new parent, a grandparent, or anywhere in between, we’re dedicated to providing you with mentors who can offer empathetic support, share their knowledge, and help you find hope in the face of adversity.

Haley Thomas, LMSW

I’m proud to bring this program to Hope for HIE’s community, knowing the positive impact these 1:1 mentorship programs can have on our families.

With over 15 years of experience, Haley has ample experience supporting families from the beginning-to-end-of-life and specializes in helping families cope with trauma, unexpected diagnoses, and hospitalization in the NICU, PICU, and ICU. She is passionate about expanding the range of peer mentor services to HIE families.

Allison M.

I want to help families as others have helped me. Families need to know that they are supported and not alone in this crazy, unexpected journey.

Allison is mom to Rob, who is 6 years old. She is a bartender part time and is driven by the desire to pay forward the support she received during her own journey and the commitment she feels to connecting families to a sense of hope and support.

Megan C.

No one knows what will happen along the way, but we will be there for each other. New families need to know that we are here for them when they need us.

Megan is a union activist dedicated to raising awareness and actively dismantling systemic racism in the workplace and community. She is also a children’s book author, writing a book for her daughter that explores the experiences of being a Black child with cerebral palsy.

Suzi B.

For so many of us, the loneliness and despair feels all-consuming at the start of the HIE journey. Having someone who really gets it from the very beginning makes a difference.

Suzi is a mother of two beautiful boys, a seeker of wisdom through words, and a woman on a journey of personal evolution and healing. Her passions lie in exploring the many layers of this life through its love, grief, joy, and complexity, and she supports others to do the same.

Khadijah H.

I want to empower families by supporting them through their unique journey and – above all else – help them find hope through all of the complexities of HIE.

Khadijah, known as ‘KB’ by family members and friends, is a veteran, mother, disability advocate, and children’s book author. She dedicates her time to bringing HIE awareness to the world and supporting others to live their own version of a great and fulfilled life.

Lynn G.

Hope. There is hope. We can find joy and support during this journey. No matter what you’re going through — the good or the bad –you have people here to listen.

Lynn has been a member of the Hope for HIE community for over 9 years. She is the Mom to Kyla, her silly and very sassy daughter who has Cerebral Palsy and CVI and thinks she is the funniest person around!

Nicole C.

It’s important for families and every other member on this journey to feel acknowledged and supported as they begin to realign and readjust to their new lives.

Nicole is dedicated to offering empathetic support and guidance to the HIE community in a way that emphasizes advocacy and inclusion. When she’s not drinking coffee, her hobbies include photography and reading.

Hope R.

You are not alone in your journey. Many families out there have gone through the same experiences and can offer so much support and love.

Hope is a single mom to her son, Logan, with severe HIE. She loves being an advocate for and helping others. She also loves traveling and going to the beach for fun.

Kat S.

Grief and growth are deeply personal processes, and it’s so important for families to know that these processes are non-linear.

After her son’s HIE diagnosis, Kat was worried about another hypoxic event occurring with her second pregnancy. With help from the Hope for HIE community, the Pregnancy after HIE group, and her family, she found comfort and was able to advocate for herself, her unborn child, and her son all at the same time.

Romm N.

 If I can make even the smallest of difference to someone’s well-being and journey, I’ll be content with that.

Romm and his family have been part of the HIE community since their son Bodhi’s traumatic birth in 2015. With the support of friends and family in their “village,” connections they’ve made in the HIE community, and guidance from professionals, they have struck a life that has had its challenges but is still very fulfilling.

Brandon C.

I look forward to sharing experiences, offering support, and brightening the path for others. Together, we can find strength and hope.

Brandon and his wife’s son was born in 2019, four months before his due date, and within a couple weeks fell ill to a severe infection that caused HIE. Despite significant disabilities, he is joyful and sweet and brightens their lives. They love to be outside together and to spend time with friends and family.

Stephanie L.

I’m deeply committed to supporting others on their HIE journey. Together, we can navigate the complexities, find solace in shared experiences, and walk this journey with hope and resilience.

Stephanie is a technical training specialist for a large healthcare organization in the Midwest.  She and her husband adopted their son, Jake, through foster care. He was placed with her family at 5 weeks old and has severe HIE as a result of a birth injury.

Carol S.

I am excited to be a peer mentor to offer a kind word and a listening ear to reach a wound that only hope can heal.

Carol is married and has two adult children and a wonderful daughter-in-law. She is also a media specialist at an elementary school. Carol has a precious 9-year-old granddaughter named Isabel Grace, who is diagnosed with HIE, whom she says is the love of all of their lives.

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