This is our story - STXBP1

Some may call this bravery, some may call it courage, but it’s really pure and unfiltered love.

As someone with a rare disease, I can tell you that having a fierce mama like you (and fierce papa like Grant) advocating for Lucy is EVERYTHING. She’s so fortunate to have you both as her parents. ❤️❤️❤️❤️❤️

As a special Ed teacher I can’t begin to tell you Leann and Grant how happy it makes me to see you be on Lucy’s side, her timeline, and to say out loud that you don’t compare her to anyone… I would wish a million wishes that all of my students parents could be like you two… Lucy is so lucky but you two are luckier ❤

Thank you to Grant for bringing Luna Bean. I didn't know my heart needed to see the entire family together! ❤️

Also and I say this with every ounce of meaning I can - “That’s how love works, (Mom)❤️❤️❤️”

As a mama to a little who also has special needs, I appreciate the vulnerability to have this conversation with the world. You’ve been so missed ❤

My first thought was that it is so unfair that you had such a difficult journey to conceive only to be given a difficult journey in parenthood but now I think the difficult journey to conception has prepared you and made you stronger so that you can be the absolute best parents to Lucy ever. She is so lucky to have you the same way you’re lucky to have her. She is beautiful and you are parenting her beautifully. I wish you all the best and so many victories in your future. You are all incredible champions! Thank you for sharing your story.

It is so evident that God handpicked you to be Lucy’s mom. When you speak of her you can tell the love and patience you have for her. Just like Lucy is the light in you life, I know you are the light in hers. Sending all my love and prayers! ❤ you guys have a beautiful story and I am so glad to see you back here on YouTube! And thank you for you spreading awareness on rare diseases!

Our daughters are the same age and she also has an incredibly rare neurological gene mutation. Our stories are so similar. My daughter also has epilepsy. I’ve watched you for years and I literally feel like you are telling my story too. What an incredible mother you are. You are Lucy’s expert. No one knows her better than you do.

I work in the NICU at CHOP and I cannot tell you how amazed I am by all of the incredibly strong NICU moms and dads! There's no doubt that you and Grant were meant to be Lucy's parents -- you're doing such an amazing job. Thank you so much for letting us be a part of your lives - sending all of the love to your family!

I have such a high, intense level of respect for you for taking your time to share your family's story until you were truly ready, for being confident in your role as Lucy's mother , for embracing your role as a parent in the rare disease community. Phenomenal update. Thank you so much for sharing and wishing only the best for you all 💓

The first time my baby sister had a seizure she was a baby. It was the scariest moment for my family; I’ve never seen my dad cry like that since in this hospital. Years and years of neurologists, eeg’s, tests… I know how terrible it can be. But she is 27 now and living a great life! She is developmentally delayed, but she is so smart and remembers everything. She’s my best friend. I also want to tell you that she could hear us comforting her during her seizures. She would repeat things like “it’s okay, I’m here for you” when I was upset, which she had only been told during a seizure. Thank you for sharing your story. So much love from Kansas ❤

I broke out in tears at the end when you said “This is what I’m here for and this is why I’ve built my platform.” It really does go to show everything can happen for a greater reason. You have built such a community and we have all watched you through many journeys. Ivf and bringing your miracle baby into the world being the latest. It is no coincidence what you have built and I am in awe of your strength and positivity. Stay hungry for support and research because I know Lucy is going to do amazing things. ❤ Sending so much love!!

I love when you said, “We are on Lucy’s timeline.” I’m a mom of two teens with autism. They are both non-speaking and profoundly affected. It has been extremely challenging and we have been told similar things- “they will never talk”, “never be toilet-trained”, etc. We have been through all the therapies too, and they both use AAC devices to communicate. But our son who is 16 has just started saying a few “words”. They aren’t completely clear but you can tell what he’s saying. It has been amazing to see - and hear! We will never say never and never give up hope. Sending love from Iowa to you, Grant and beautiful little Lucy!

My daughter Sophia was also born with a rare diagnosis. She has trisomy 18. She was given 2 weeks to live when she was born. They told us just terrible things about what it meant to have a child born with this. The first year was horrible. But she's still here, 8 years later. Our normal is different than others, but she makes the world better. This is a club no one wants to join, but our kids are the strongest, and most incredible humans on the earth. Congratulations mama❤️

You’re so right, I think your true calling is to help Lucy and others diagnosed with STXBP1.

AHHHHHHHH SHUT THE FRONT DOOR LEIGHANN, I'm literally gonna cry!! I'm so happy to see your face again!!

As a pediatric speech therapist, Lucy is so lucky to have you advocating for her. I can feel your love through the screen 💛

When you said the part about the doctors letting you carry her because they didn’t know if she would make it, I broke down. Prayers for you and Lucy and Grant. You are a fierce mama!

As a mommy to a special needs child, what you said resonates with me so much. We are experts when it comes to our babies. We are their voice, advocates, and it's truly an honor to be their mommies. Wishing you and Lucy many more years seizure-free. ♥