Raising Rare Raising Rare

On this episode we talk to Michelle Fruhschien a mom of two, Noah and Hailey(Jordan Syndrome). 
The moment she was born, Michelle says she knew it in her bones that something was different about her daughter even though she didn’t start seeing symptoms for another two months. Over the next few months, Michelle spent a lot of her time googling, asking others for their opinions and was eventually able to see an Ophthalmologist who noticed an issue and suggested seeing Geneticist and then a neurologist after a misdiagnosis.
Michelle has built a supportive community for herself through social media. In the beginning of her own journey a friend told Michelle that she would get through this and eventually would be the stranger giving hope to a newly diagnosed family. Listen along with us while we hear about how important her community has been and the grief and joy that has accompanied it.
Learn More:
mamabearforrare.com
jordansguardianangels.org
Mentioned in this episode:
Invitation to Check Out The Atlas
The Atlas

“We have a heartbeat, right?” Josh and Kristin Hoyle knew that life with their new daughter Chloe was going to be different and likely difficult long before she was born. Even in this knowledge, they believed there was a purpose for what they were about to experience. And they leaned into the challenge.
Chloe has Bohring-Opitz syndrome and requires 24/7 nursing care to attend to her respirator, trach, and airway. When the visiting nurse services proved inconsistent, they made the decision to take on that round-the-clock care themselves. That meant Josh would leave his job.
And throughout all this, they found purpose and strength through helping other families. Their story is one of strong faith, amazingly positive attitude, and love. 
Mentioned in this episode:
Invitation to Check Out The Atlas
The Atlas

On this episode of Raising Rare we talk with Stacy Lloyd, a rare disease patient and board certified patient advocate. Stacy has dedicated her life, even much of her free time to healthcare in one way or another. She currently works at the American Medical Association, previously at Saavy Co-op, and is on the board of the VHL Alliance. After being diagnosed with Von Hippel-Lindau (VHL) at a young age, doctors told Stacy that she might not be able to walk as she got older and tumors continued to grow. She went on believing this for most of her early adult life and even admits that she never thought about retirement or other aspects of growing older because they just wouldn’t pertain to her. It wasn’t until 2018 that a doctor she met at a medical conference for VHL told her that she was going to be alright, she would be just fine, that she started to really consider her life.
Stacy’s diagnosis of having a rare genetic condition at an early age actually led to a number of her family members being diagnosed as well. Stacy speaks with us candidly that not everyone has handled their diagnosis with as much hope and drive as she has and that a number of factors have played into that. Stacy’s hope for members of the rare community is that everyone continues to share their stories, that they continue being vulnerable with each other and their medical team because you never know who will benefit from you doing so.
Mentioned in this episode:
Invitation to Check Out The Atlas
The Atlas

As Raising Rare continues to grow and evolve we are going to start bring in professionals that have beneficial stories for Rare Parents. These are individuals who have dedicated their lives to helping families in one aspect or another as they care for their children. Their viewpoints, stories, and perspectives are uniquely beneficial to parents that are involved in the rare community.
On this episode of Raising Rare we talk with Neil Ead, a 40 year veteran of the nursing field who has focused his career on pediatrics and more specifically chronic care. Neil discuses with our cohosts the importance of preparing in advance for the transition from pediatrics to adult care. This process includes finding replacements for most to all members of the care team and how hard this can be for the team members and the family. 
Mentioned in this episode:
Invitation to Check Out The Atlas
The Atlas

On this episode of Raising Rare we talk with Megan Nolan, a rare mama working to make a difference for other Rare Families. Megan has launched the online magazine Rareparenting.com in an effort to provide rare families with resources that may be beneficial to them.  
Like so many other rare families, Megan has experienced the trials and tribulations of the healthcare system and how important it can be to move to the right location. She and her husband decided to use their skills and resources to build The Children’s Rare Disorders Fund (https://www.thecrdfund.org/) to help support R&D. She wants the fund to help small disease organizations work together and reduce duplication of effort. Listen along as our hosts discuss the different obstacles she has faced and why certain aspects of her son’s journey with FOXG1 have taken so long.
Mentioned in this episode:
Invitation to Check Out The Atlas
The Atlas

This episode we are joined by Aisling Finn, an amazing poet and rare disease mama. As she shares her poetry with us, we react to the emotions, struggles, key moments and pain that are so clearly pictured in her words. Aisling shares with us the impact that writing poetry has had on her, and her expression of her feelings, and how they have helped her cope with her own rare mama journey. 
Each of the poems that Aisling shares with us touches on a different impact of her life, stories that so many rare parents can relate to, understand, and feel the impact of. This episode is truly special.
Aisling’s poetry can be found on Amazon, Hope and Motherhood: Plot Twist.