Heidi’s Story | Angela’s Angel Award Recipient

You can watch the full video of Heidi’s Story here (or down below).

Learning about EB

Heidi: I met Chris about thirteen years ago now. I noticed a blister on his knee I’m like, oh where’d that come from? I didn’t notice that before. And he kind of brushed it off.

Starting a family

Chris: When we first got together I told her what EB was, but then as soon as she was pregnant with Max, then it was like, ok, now she has to know EB intimately just in case Max was born with EB.

Heidi: When we became pregnant with Max, we realized that we had a 50% chance of passing on the gene to him. He developed a little blister on his thumb and we’re like, that’s EB. Some people passed it off. No, no, it could just be from sucking his thumb. I’m like, no it’s EB. It was just very overwhelming because being a new mom, you’re like, oh, something else I have to contend with. There is no right answer on how to bandage and maintain wounds that just keep happening.

Adapt and plan

Chris: The world’s not going to change because you have a sore thumb. You got to kind of adapt to that world. It just takes a little more planning which I’m not good at. That’s definitely my wife’s area of expertise. Heidi’s fantastic.

Heidi: Having kids, you like to prepare them for certain pitfalls that might happen, but they have to learn for themselves and EB is exactly the same way.

Superwoman

Chris: With the kids, she’s been on top of everything and she’s advocated for them more than I could ever even comprehend where to start. She’s mastered the art of bandaging. As a mom, she’s been very good at encouraging. I just want them to have joy, happiness, fun, breakthrough challenges, problem solve, and I see them doing that. I’ve never met anyone who could have what she’s had dropped in her lap and take it with such grace and make it look easy. She’s taken on the role of mother obviously and doctor and supporter, comforter all while pursuing her own dreams and keeping the house and figuring everything out. She’s definitely Superwoman.

Taking on the challenge

Heidi: Everybody has their own challenges in life, no matter what it is, and this is just ours. We live life the best we can despite our challenges, which is really not so different as everybody else.

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