evie

Imagine being diagnosed with an incurable rare disease before ever being born. This is the reality that Evie faced when she was diagnosed with hypophosphatasia, a condition impacting bone growth, breathing, and mobility, and often gives patients just 18 months to live.   

Luckily, her story doesn’t end there. At three months old, she enrolled in a clinical trial for a first-of-its-kind medication that her mom Lindsey claims “probably saved her life”. Today, Evie is 13 years old and continues to defy the odds, giving hope to other young children suffering from a rare disease that they too can find the strength to overcome anything life throws at them.  

Join Evie and Lindsey for this emotional look at their journey, how the power of collaboration has helped them along the way, and Evie’s goals for the future.

Show Notes 

• Every Patient: Evie 
• Evie's Story 
• Rare Disease Impact 
• Charles River Partners with Soft Bones: The US Hypophosphatasia Foundation 
• Probing the Genes of Rare Disease 
• No Time To Waste: Collaborative Efforts in Rare Disease Drug Discovery 
• Charles River Discovery Services 

Each episode I am joined by a bereaved parent to discuss baby loss, neonatal death, stillbirth, miscarriage, ectopic pregnancy, molar pregnancy and other issues related to pregnancy resulting in a loss. We will discuss other complications that may have left a devastating affect both physically and emotionally.

In this episode I talk to my friend Fiona who was a befriender in my SANDS group, During Fiona’s first pregnancy she developed preeclampsia and her daughter Evie was born by emergency cesarean. Sadly ten days later Evie passed away. Just one year later they made the decision to end their second pregnancy through a medically advised termination at five months gestation.

**Trigger warning for this episode. Discussions on baby loss, stillbirth, neonatal death, miscarriage, preeclampsia, emergency cesarean, medically advised termination, COVID-19 and contains explicit content.** 

Evie Phelps makes her first appearance on Vibing With Sleezy: The Podcast via Zoom. Evie Phelps is from Indiana and she is an expert on plants and crafts. This is episode 4 and we discuss plants, crafts, creativity goals, and life in general. This is such a fun episode and Evie brings such great energy to this episode. You will notice in the first minute of this episode that there is raw audio of us getting ready for the episode. I decided to leave that in there to give you a behind the scenes look of how I get launched in. This is not something I include in any episodes but giving Zoom a first try, I thought why not for this one. I am excited now that Zoom is a way I can start doing interviews with people all over the world. Vibe with Evie and I! 

Some classic Jesus music including:
Christmastime – Larry Norman,
Saviour's Day - Sir Cliff Richard,
Star Song (There Is Born A Child) - Sheila Walsh,
Christmas, A Happy Tme – Evie,
God Rest Ye Merry Gentlemen - Kim Hill featuring Phil Keaggy,
Christmas Time Is Here - Russ Taff,
Everybody Sing A Christmas Song - Jon Gibson,
O Holy Night - Crystal Lewis,
Breath Of Heaven (Mary's Song) - Amy Grant,
Emmanuel - Michael W. Smith