I’m a training school psychologist who works with a lot of children with disabilities. And the way you talk so compassionately about Lucy and her independence, and assistive devices as support towards walking goals while understanding walking may not be in the cards has me sobbing tears of joy. You were destined to be Lucy’s mom, and it makes me so happy that we have advocates like you in the world ❤

Your dedication to raising awareness for her rare diagnosis is so heartwarming. Yall have done an amazing job!! I've enjoyed watching your family grow all these years.

Lucy’s development in her core strength is so evident when she’s sitting in the wheelchair! Go Lucy go!!!!

as an educator to people with disabilities, it is so comforting to see you both do everything you can to promote independence for Lucy. everything is such a process that you dedicate so much time to. and that is so commendable. thank you for being such amazing, proactive parents!!! 🤍

Long-time follower, and was just thinking of how different life is for you now (like, who could have imagined it back when you were making videos in ye olden YT days?!) yet despite the life-altering challenges you have faced, you've somehow remained so genuine, determined, and positive. I am in awe of you and Grant and Miss Lucy (who is suddenly looking so grown up in her wheelchair?!) and appreciate your candor and openness in sharing your journey as a family. I know her story will help raise awareness, generate more funds for research and most importantly, improve quality of life for children and families who are also on this journey. Kudos to you all for being such tireless advocates. I work on the other side of the circle of life (with seniors) and I have such a deep appreciation for caregivers at all stages of life. It's HARD. x1000. Keep up the great work, Mom and Dad! Y'all rock. Big love from Dallas. Can't wait to see what's next in this beautiful life story!

As a speech therapist that works with AAC and students with disabilities this is so exciting to see her getting into all her equipment and you as parents supporting it all

The way Lucy looks at you and Grant is so sweet.

As an adult who requires a wheelchair occasionally, hearing how you talk about Lucy needing it is amazing. Your such an understanding parent who you can tell lives for Lucy!

I’m a speech therapist and was so thrilled to see the AAC for Lucy. She’s gonna pick up on it so quickly. So many parents resist the device but it’s so helpful giving kids a means to communicate as early as possible whatever that may be so that they don’t feel so frustrated and helpless when they need to express needs. I’m just so happy. You’re doing amazing Lucy and Grant too of course! 🌵💛

PT here - Lucy is flourishing!! Look at that sitting balance! She's interacting and communicating with you, Sam, her environment, etc. I love that you are looking into a wheelchair and gait trainer. I agree, this will only increase her independence, not hold her back!

Just in case y’all don’t hear this much(but honestly you should hear this EVERY DAY) you and Grant are such great parents!!

Love seeing Lucy get set up with all of her devices for independence! I work in vocational rehabilitation but used to work in a supportive classroom. Much love to all of your through this journey!

Oh my goodness, Lucy is getting so tall! She’s absolutely precious. 🩷

So much has changed in your life since the days of sitting in your car vlogging while you were in college, and now that I've got to be an outsider that you allowed to get to know you and your family I just love seeing this chapter. I know you guys never expected it but you have embraced it and everything that you guys have gone through and what you have in front of you is just an amazing journey. You guys are so strong and you have such a beautiful daughter and I can't wait to see what she can show us. Your family is amazing thank you so much for letting us witness what you go through. I told so many people about Lucy's story ever since we got to "meet" her and I'll tell you what there are so many people rooting for her that have never even seen her❤

As someone who has cp and is a full time wheelchair user, it’s awesome you’re getting Lucy a wheelchair so young! I used basically a stroller until I was in high school and I wish I had gotten a wheelchair sooner because it would have helped me with my independence.

It makes me so happy to watch her progress. My grandson is non verbal autistic and he communicates with his iPad. It was what was used in the school room for them to communicate. You are strong parents

I love the update on the panel you're on! I also love seeing you guys show up for Lucy. Every single day. Fighting not only for her but others like her. It goes without saying that all kids deserve grown ups who love them and it fills my heart with joy to see you guys pushing so hard so consistently. Keep it up! ☀

Idk how but I can’t imagine Lucy having any other name than Lucy. It’s just so perfect just like Lucy! Also, she favors Grant SO much!🥰💜💜💜

I love how gentle the kids were touching each others face. So cute. Glad to see you all doing well.

Lucy looked like she was ready to go with that wheelchair. She's just so cute. I'm so happy she's doing well. Do whatever you can to get any kind of help for her that you can. This way she will have all the opportunities. Sending you guys a great big hug!!

It’s so special and so touching to see your dedication to doing all that you can do to see that Lucy has every possible chance to be all that she can be. Go Lucy!

Seeing Lucy and her Cousin Sam is so precious! 💛

I'm an adult who got my first wheelchair 2 months ago due to my own worsening conditions. It has been the greatest tool to my own independence!! I can go to places like the library, the mall, or the museum where a lot of walking/standing is usually expected. It's so nice to know I get around without fatigue and other issues. I hope Lucy loves her wheels just as much! 👩‍🦽💖

Lucy is the perfect combo of you and grant. And she seems like she’s going to do really well in her wheel chair, she seems strong. Oh and Luna is so cute ❤

Lucy is such a little dolly! She's so full of joy! 🩷 She's so lucky to have such fierce and loving parents who are also her best advocates. 💪

I have been a subscriber of yours for a long time and as a wheelchair user who was born with Spina Bifida it makes me so happy watching you advocate for your daughter's independence. You are a wonderful mom. ❤

What a little angel, Leigh Ann. So crazy to see how far youve come from your old days. Life is amazing.

Lucy is blessed to have you both as her parents. I love how cute Lucy and her cousin play together. It's so nice to see the twins. TFS your DITL!

Omg her little smile when you woke her up from her nap to play with Sam 😭😭 she is such a sweetheart!! I love that you have found such a wonderful team to support Lucy, having her therapist there to help with selecting her mobility equipment is amazing! ❤

Lucy is growing like a weed and she is such a bright, happy little girl!

Lucy is so absolutely beautiful and precious. You are blessed to have her and she is blessed to have you.

I just feel like every day and every post I’m like go Lucy go just like an honorary auntie

Leighann, as a special education major I wanted to say how proud I am of your ability to understand Lucy's needs and your positive attitude for everything. We often hear that it is very difficult for many parents that have children with disabilities to be so forthcoming especially when their children are young. Your positivity in everything is contagious! I'm so glad Lucy is getting a wheelchair and AAC device as it will help her gain independence as you said. :))))

Lucy and her story, her development and your dedication remind me so much of my niece who was born with an extremely similar condition and rare disease, DYRK1A Syndrome. I remember when she got her walker, her AFO’s and her IPad. ❤️ I’ve been watching your vlogs for soooo many years (like Revlon lip stain days). You are a great mother and I feel like Lucy’s will and ambition will bring her so many new and exciting developments. Sending you all the love!

Congratulations Mary! Twins! Oh my Lord how special. Lucy is growing like a weed! From each time we see Lucy, i think she looks like Captain Grant. Then she looks exactly like Leigh Ann. She is just gorgeous

Gosh, it is like being reunited with an old friend. We have been with you all along. Thank you for sharing your journey, for being an advocate, and most importantly for sharing Lucy with us. Sending so much love to all of you.

As someone who grew up around an uncle that needed a wheelchair due to Muscular Dystrophy, it really warms my heart seeing how supportive you are of Lucy. A caring and loving family is crucial to overcome those disabilities and let her discover and be her best true self, in her own way. The wheelchair will give her a lot of independence! 💖

so happy to see another vlog from you:) I love the energy you Lucy and grant bring to the world ❤

I absolutely squealed when I saw you posted. Love seeing Grant and Lucy and mom. You guys are truly making a difference. Yes. I watched Shiny Happy People. They need to add some more episodes. So interesting.

First off I've been watching you for YEARS, love your channel. I wanted to thank you for bringing awareness not only to your daughters condition but to disabilities in general. I was born with Spina bifida. I got my first wheelchair around the same age as Lucy. To get me to learn to push myself my parents took me to the mall. I love your drive to get her to have as much independence as possible. You were meant to be her parents.

She is so strong!! I don’t think I in all my 40 yrs, have ever had as much core strength as Lucy has at 2. She is such a strong and happy little girl

Leignann you inspire me in so many ways. Your strength , determination and charisma I can just tell has already done so much for the awareness of stxbp1. I look forward to following your journey and continue to support you, the cause, and your family in anyway possible. You have always felt like a big sister to me

Lucy is so adorable! You’re such a great mom. And I don’t know if it was just me but when I saw her in the wheelchair all I could think was I see her walking one day! I feel like she is so resilient and there is so much in the cards for her I’m sure! I’m so glad that you and grant are her parents! I’m a long time subscriber of yours and it’s so heartwarming to see you as a mom! ❤

Thank you for continuing to share your journey with us. We are all rooting for Lucy and the entire Granteroni family ❤

A Leigh Ann and Lucy vlog??? Best way to start a week! That little girl is too dang cute! You're such a good mom, Leigh Ann. Granteroni isn't too bad himself 😉

the work that you are doing is amazing! getting a dx code is BIG. (incredulous there isn’t one already!) Lucy is an indomitable spirit! god bless you and your beautiful family, congratulations for the twins!

Your love for Lucy brought me to tears. You and Grant are both incredible parents and Lucy is simply amazing ❤.

So excited she’s getting her AAC device!! That is HUGE ❤️ and it’s a game changer for sure! Go Lucy, and go Leighann! You are super mom 💪🏽

It’s so great that you are not only bringing awareness to this disease, but also to the hurdles so many people have to deal with, especially in the US, to get the care and equipment they need for any disease or disability. It’s shameful how hard you have to work to get the things Lucy needs - it seems to be a full time job in and of itself. All of us healthy, able-bodied people take it for granted, while we, or someone we know, are all potentially just a moment away from needing these same things. It benefits us all in society to ensure easy access to and affordability of healthcare for all. Thank you for all you do to shine a light. I’ve been loving the vlogs. So glad you’re getting back into it!

It’s so amazing to see her progress! You both are truly doing an amazing job. I never had any doubts you’d be a wonderful mother, but it definitely shows! I hope you are all doing well!

Lucy’s eyes “communicate” so much ❤ Love watching her grow.

Oh I'm so interested to hear about your and Lucy's AAC and wheelchair journey! I just started a new job as an early support family services provider and we get a lot of medically complex kiddos who use various adaptive devices. It would be awesome to know how that works from a family's perspective because that isn't in our purview.

I cry every video with how sweet Lucy is and what a good mom you are. We were going through IVF at the same time and it’s so beautiful and such a miracle that Lucy is here and my daughter is here!

Yay! Wheelchairs are such a blessing. I have one. It really makes life so much easier. Lucy is so beautiful. I'm so excited to see your video. I just got out of surgery (successful!) and am waiting to go home. Needed a cute video to watch while I bide my time waiting for the transport out to the car. Lucy is the best! Love to Lucy and Luna and you and Granterooni!

She’s so cute in that wheelchair. I hope she has many wonderful walks in it. ❤

I love seeing you guys advocate for Lucy and kiddos like her. You guys are such sweet parents and you can just see how much love is in your family.

So happy to see you, Grant, lovely Lucy. my favorite Luna, your sweet mom, handsome Sam, the adorable twins and your smiling sister! Whew! Also excited to see Lucy’s development (what a cutie she is!) and all the new mobility devices coming her way. I’m sure she’ll be zooming around the house in no time!

I feel it's no different then when i put my toddler in a walker to help her/ him learn to balance and walk. I think this will be good for Lucy. So happy to see you back and fingers crossed yall stay back. It's awesome to see her grow.

You, Grant and Lucy are all so amazing! Can’t help but tear up watching her be so strong and watching you talk about her ❤

I have so many things I want to say! But I’ll sum it up with this- you and Grant are such incredible parents ❤️ Lucy is thriving and you can feel how much you two love her! I’m sure there have been many many hard days to get to this place, and every “first” and every milestone Lucy hits must be so rewarding!

It's so good yo see you on KZfaq. Lucy has the best smile and beautiful blue eyes. All of her progress is so exciting! So is her new chair and communication tablet, that is so cool! I'd love to see it in use. Lucy is blessed to have such strong parents advocating for her and the entire community!

I just come across your videos as a mother of a son with learning disability epilepsy I really hard work but the rewards are amazing my son is 41 now still has epilepsy and learning disability he has the mental age of 5 to 7 years but he is doing very well still needs a lot of help just remember always God only gives special children to special people I wish you all the best be happy be safe ❤love and hugs to your very special little girl ❤

Love to see it it’s only 5 min of your day, the growth, the positivity, the educational part of Lucy’s life. It’s great to see it! Been here since pre Luna and I’m happy to be allowed to be (in a small way) part of your journey👌✨

Who's cutting the onions?! 🥺 Lucy is such a sweet angel. You guys are doing such an amazing job!

Aac devices are the best! My daughter has autism and she used it until she became verbal! So excited to see her new chair! Love an og follower ❤

I say this with all my heart, it's like you were made to have someone in your life that needed all your attention. Lucy is very lucky to have you as a mommy, and Grant as her daddy. I wish your family nothing but joy and happiness : )

Haven’t watched a vlog of yours in years and opening up and hearing you voice was like connecting with an old friend❤ I am so happy for you and how your family has grown, you all deserve all the best!

You guys are doing such an amazing job with Lucy. She is so lucky to have parents that are supporting her abilities and keeping an open mind with regard to stepping stones and final destinations. And you are both so lucky to have sweet Lucy showing you a new view of the world. So excited to see how her communication flourishes with her AAC device💕. Thank you for sharing with us all.

I must say... i was so thrilled to see he standing on your story on IG. I know how much you both tried and how much Lucy has attained because she tries her best and beyond!! She is a fierce fighter!

You have so much optimism around Lucy and each of her wins! You are the reason she is doing as well as she is. I love your perspective on the wheelchair and just giving Lucy all the options so that she can experiment with what supports her at different stages. Here for you and your family always❤

I just found your page, but as a Rare disease mom I am SO THANKFUL. My 7yo has Pachygyria and uses a wheelchair, walker and speech device too. I feel so happy to be able to relate somewhat to SOMEONE. ❤❤❤❤ Stay strong!

I’m a teacher of the visually impaired and it’s a joy to see students zip down the hallway in their gait trainers. Lucy is making so much progress. 💗👏🏻🙏🏼

So cool getting to see Lucy’s journey with stxbp1 and see her grow up and advance! Thank you for sharing with us 🤍

It's great that you are able to vlog again. Lucy is adorable and you and Grant are wonderful advocates for her.

Go Lucy! Amazing to see how strong you are! You have a huge cheering squad! 🎉

Such exciting updates. I love watching Lucy grow with your and Grant’s love. ❤

The self care portion of this video made me miss your empties videos 🤣 love ya!! Sooooo happy for you all

I just have to say, I've been following you for such a long time and be in the same stages you are with Lucy, are some of the exact same things I'm going through with my son! We just ordered our AAC device and can't wait for it to get here! Our kiddos are experiencing some of the same things with equipment. Your vlogs truly warm heart to know I'm not alone!

I love watching Lucy grow and your dedication to supporting her while still meeting her right where she is. ❤ No matter what, you love her for being perfectly her (and she seems so wonderful). I don’t think she could have gotten 2 better parents!

Lucy's core strength seems it's really improved! Go Lucy!!!

I think the gait trainer and wheelchair are both important. When Lucy gets tired using one, she still has the other!! Lucy is such a happy girl and I can’t wait to hear all the things she has to say with her new tool!! Amazing🥰🥰🥰

God definitely knew what he was doing when he entrusted Miss Lucy to you!

I work for a day program for intellectually and developmentally disabled adults, and let me tell ya, we have a few people that use communication devices and I've had some amazing conversations with those people. Lucy is gonna do great in life. She seems like the sweetest little girl. I've been watching you on KZfaq for as long as I can remember. You seem like the best parents. God definitely chose the right people to be Lucy's mom and dad. ❤

Congratulations to your sister! All the babies are so cute, I can’t believe how big miss Lucy is getting! Major kudos for speaking to the the FDA and advocating for Lucy and her peers on that level, that is so dang cool! 💙

Fighting insurance feels like going to war with an invisible psychopath that tells you you’re crazy for asking for the bare minimum to survive 😭😭😭😭😭😭 I’ve been fighting with mine for months just to go to monitored PT because we need that info for lung transplant doctors (my insurance effed me over on that too, I’m in Waco and they sent me to San Antonio instead of Dallas 🙃) I’m just so tired lmao

seems like yes you’re the mom and all moms do a lot but Grant is the star of Lucy’s show haha but isn’t that how it always is? girl dads get all the credit haha!!

Thank you for all the updates! So glad to see you're all doing good. Lucy is a real fighter, and so are you!

I'm so proud of Lucy and can't wait to see all of her new accomplishments. Your dedication to Lucy is so heartwarming. 🩷

Yay! I literally paused my video I was watching when I got this notification, it's always a good day when Leigh Ann vlogs! Go Lucy go! You are so cute in your wheelchair and playing with Sam Bam ♥️

LEIGHANN YOU ARE AMAZING!!!!! I’ve been following you for like 10 years probs and wow you’re such a great mom :) and absolutely!! AAC and wheelchair promoting her independence is absolutely the case, it will not hinder her! I work with non-vocal kids with autism and parents always are concerned about AAC causing the child to not talk but the research shows the opposite! Your instincts are spot on, I’m so proud to follow you!!

Special education teacher here!! I love seeing families who are there to support and encourage their kids while being realistic. Lucy is blessed to have you and Grant as her parents ❤️

I just love her! Lucy couldn’t have been born into a better family! Dr. Daddy and determined Mama are the best team for Lucy 😊 she will absolutely make an impact and bring awareness And cures to this disease! Go Lucy go!

I have been following you since before you got Luna. Pretty sure I was in high school or college. I am now a special education teacher. It has been so cool to grow with you and realize that I followed you all those years ago for a reason other than beauty reviews. My cousin has special needs a lot like Lucy. She has been such an inspiration to me. Thank you for sharing the realities of being a parent or caregiver for someone with special needs. Lucy was definitely sent to you, you were meant to be her mom!

I have watched you for so many years and it has been amazing to follow your journey and watch you become a phenomenal mom to Miss Lucy. I am 4 months pregnant myself now and am excited for the future! I hope you keep vlogging, it’s so wonderful to see what your little family is up to ❤

LeighAnn, I started watching your. channel long before you ever met Grant! I got married a few months after y’all did and had my first baby not long after you had Lucy, so it feels like we’re kindred spirits in that way. All of that to say, I’m a longtime viewer and I love these updates on sweet Lucy! She is precious. 💛

For anyone else who is looking for the podcast mentioned, the Podcast channel name is Friends With Davey. Then the episodes are named Surviving the Shiny Happy People Cult

I’m so proud of you and Lucy!!! 🥹 you bring each other so much joy!

My 10 month old daughter is Lucy's BIGGEST fan, she LOVED watching Lucy play 🤍

As a school psychologist the AAC device is one of my favorite things to witness when I get to observe students use it. What an incredible option for communication!!

The little wheelchair is adorable! I hope she gets all the equipment she needs to thrive