This is our story - STXBP1

This is our story from birth to where we are today with our sweet baby girl Lucy. Thank you so much for being here.
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[@UofMFootball163]

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

[@MarleeCM]

Bravery and courage are the same thing…

[@sweetsanddandy8639]

@@MarleeCM 🙄

[@adrieneceleste]

It’s what keeps the stars in the firmament ❤ Great job to both parents and Lucy ❤️

[@shannoncanady6949]

@@MarleeCM since you want to argue semantics, you are in fact, incorrect. Bravery is taking action without fear. Courage is taking action despite fear. It is wise to make sure you are correct before you correct someone else.

[@amixeblu]

Sweet comment!

[@ninjajeje]

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

[@Nosolorisascompilaciones]

Sammmmeeeeeeee

[@leighannsays]

😭🥰

[@katherineg9876]

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.

[@morganf9951]

Hi Katherine, my son also has a rare gene disorder and has epilepsy. It's so tuff to see our little ones struggling and it's even harder when people don't understand what our kids and us are going through. Just know you are doing great! And not alone😊

[@wendytonial885]

❤

[@mommashawna707]

My daughter has epilepsy also but the seizures didn’t start until she was 14, I just can’t imagine what you both are going through. My heart just aches for you. Just know so many of us are here to support Leanne and you.

[@cathleenweaver6483]

Absolutely no one knows Lucy better than you do. In all your IG pics she looks like such a sweetie 💜💙💚💛🧡

[@LoveJesusAlwayz]

Did you take any medications while pregnant? Or get any shots? Honestly question. Praying for your daughter and family!

[@modom11]

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 ❤

[@lilacks17]

Yes!!!!; As an OT, I thought the same and how important that is. You guys are brave, strong, powerful, and wonderful. So full of love. ❤️

[@genniejefferson6588]

She’s a beautiful baby and please keeping being the great parents you are. You and Grant deserve the most love. All are so wonderful.

[@KarlosMartinez-j5l]

1:24 1:25

[@KarlosMartinez-j5l]

​@lilacks1 1:45 7

[@malisehargrove8971]

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 KZbin! And thank you for you spreading awareness on rare diseases!

[@graccie357]

Beautifully said.

[@Ikissmyself]

yuck

[@mackenziekeith1303]

AMEN ❤

[@imogen-rc6lx]

Lucy is the product of intercourse between her mother and father. Nothing whatsoever to do with 'God hand picking her'. 🙄🙄🙄

[@annasimons389]

@@Ikissmyself I think that yuck was meant for you

[@AlyseNicolettaHolder]

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 ❤

[@wendytonial885]

Yes!

[@mirliane]

❤

[@daniellewiker9032]

Yes! Felt the exact same way. Fellow Mama to a sweet girl with special needs ♥️

[@lisamariesweet1297]

Same! ❤

[@moniqueftp]

The

[@MC_Hammerpants_]

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. ❤️❤️❤️❤️❤️

[@amandad1419]

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!

[@ericahettwer1147]

Thank you for all your incredibly hard work! ❤❤❤

[@margotrobinson943]

My daughter goes to CHOP for dermatology and I couldn’t love the staff there more. Truly amazing.

[@tiffany11o9]

Amanda, we go to CHOP for our daughters hips and you are all ANGELS. Thank you for all you do

[@Cholulasmom]

Chop is amazing top to bottom!

[@JacqueGonzalesTube]

Thank you, Amanda - to you and all the staff at CHOP who have helped my daughter through the years. You all are Angels. 💜

[@tdotcraig]

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.

[@marlynlandia]

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

[@erinenyart6813]

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!

[@amandakesterson224]

I'm so excited for you! Getting words with mostly non-verbal autism is huge at any age and I'm so happy your son has started achieving that step. Whether he is able to speak more or if this is what he accomplishes, its huge and I'm proud of him.

[@iBeauty96]

I’m an NICU nurse and I love that line. I say it all the time. Parents ask me when their kid can come home and I said “they will let us know. They are in charge.”

[@leighannsays]

Thank you so much! I'm sure I could learn so much from you! I'm so glad you guys are getting words, I cant even imagine how thrilled you and your family must be 💙

[@alliibee4015]

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

[@LilyMUTINY]

Same!!!

[@ClementineDaydream]

same!!!!!!!!!!!!!

[@btodavjones5374]

Same!!,

[@Beepbopboop19]

💯

[@jasminemp]

Same!

[@hayleyd1295]

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!!

[@jenniferm1868]

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 💓

[@redloveballoon]

Could not agree more, perfectly said!

[@CharlyeHebert]

Watching this video for the third time and I’m always still so blown away. You are her expert, you sure her advocate. You’re phenomenal.

[@susannahsaurus]

From Target hauls and makeup tutorials to being an amazingly impressive advocate. No one advocates like a mama. Thank you for being you, for sharing so much of yourself for so long, and immeasurable amounts of comfort you’ve brought to your subscribers for years. Thank you. 💜

[@brandiruble2987]

yes and DYI videos too

[@YesJosephine]

I cried the whole way through but I’m sorry I lost it when I saw Luna ❤ I have been watching you since you taught us how to make a messy bun, and now you are teaching us empathy and unconditional love, as well as educating us on this. Your family deserves every blessing, and thank you for helping other families through this as well. You are an amazing person!

[@easybudget7556]

Well said ❤

[@allysonleblanc59]

I always think of the dirty hair princess messy bun while I think of early LAS videos

[@imb1020]

Couldn’t agree more ❤

[@dbarajas18]

Ready your comment before Lunas appearance and I lost it too. I was thinking where’s Luna. Grant knew we missed Luna ❤ he’s a great father

[@whatsgoodmaman]

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

[@topekachu69]

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 ❤

[@leighannsays]

this story just hit me so hard. thank you so much for sharing this with me. you get so strong going through all this but there are moments that just cut through everything and reading this was one of those moments. i’m so happy your sister is doing so amazing and i’m so glad she could hear the words of comfort through the seizures. just knowing there’s a chance Lucy could hear me talking to her though those scary times means the world to me. thank you thank you thank you.

[@topekachu69]

@@leighannsays i hope it was helpful. I think I understand you to mean it hit in good and bad ways. I know I’m just some rando online but if you ever wanna talk idk if KZbin allows dm’s or whatever but I’d be here. I talked w my sister about this, her name is Sage, and she wanted to me to add to my comment that she got her seizure meds sorted (it was trial and error for a long time, to be real) and in the last decade she’s had like… 2, maybe 3, seizures. It gets better. Also what stuck out to me most about this video was that you said “we’re on Lucy’s timeline. No one else’s. We never compare.” Because of that I’m certain you both are not only equipped-but also made-for Lucy, and her for you. Good luck and seriously don’t feel pressured to update us on everything if it doesn’t feel right. Obviously there’s going to be curiosity and would love to hear, but you do you!! Ok. Sorry for the novel. Love 2 u all.

[@sapphireisntreal]

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

[@WhereTheBeaversLive]

This is Lucy’s story and how honoured we are to be here to witness it. She is wonderfully and beautifully made and forever a blessing. Thank goodness she was given to you and Grant, you truly are the best parents for her ❤

[@marissabrashear4405]

God knew what He was doing giving you the special gift of your Lucy. He doesn't make mistakes. Lucy is with the most perfect parents a child could have. Amazing family. Much love and prayers to you all.

[@charlotte3381]

My son has a rare disease. We pretty much lived at the hospital for the first two years of his life. He’s 14 now and has exceeded all the expectations from the doctors. They call him the boy who lived. We are so proud of him. Thank you for raising awareness! Hang in there! ❤

[@yvonnerahmes9618]

I am so glad that your son "is the boy who lived"! I celebrate with you from afar, as I do also with "Lucy." Sometimes we must refuse to accept, and somehow power through, even through seemingly unsurmountable challenges. I celebrate you and your son, and Lucy of course :).

[@coreyvogt9120]

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!

[@TACOinFLORIDA002]

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. ♥

[@Sarah.reads.sometimes]

Hi friend! I just want to pop on and say that it’s ok to use the word disabled. There’s a big discussion in the disability community about the term “special needs” because our needs aren’t actually special, they’re just different. Really the only reason they seem “special” is because the world isn’t set up for us the way it could be (and is in some spaces which proves disabled people have been ignored, thus it being a societal issue vs a personal issue). “Disabled” isn’t a bad word & lots of disabled adults prefer it vs special needs 😊

[@TACOinFLORIDA002]

@@Sarah.reads.sometimes I appreciate you taking the time to say all of this. However, I don't believe that disabled is a bad word. I will continue to use the term special needs because my child HAS special needs that must be met. I typically refer to her as differently abled or as my child with special needs.

[@TACOinFLORIDA002]

@@Sarah.reads.sometimes I also want to point out that trying to label an entire population of people who are so vastly different with one "acceptable" term, word, or phrase isn't something I agree with. Each person is entitled to whatever works best for them and/or their child. I think a big part of the problem in today's society is the need to give everything a title, category, or PC term. My child is autistic, differently abled, and has special needs. There is absolutely nothing wrong with saying so. I hope you understand my position and that while you weren't rude in your response, you were a bit condescending as if I needed to be told how to represent my own child. I hope going forward you will be more open to people using whatever phrasing works best for their family without feeling the need to publicly "correct" them. Especially since saying special needs isn't derogatory. Have a great day. 🤗

[@CrystalCat24]

@@TACOinFLORIDA002 labels and arguments about labels are ridiculous. Just stahhhhppppppp..... And focus on love and awareness without stressing about labels. 😳

[@TACOinFLORIDA002]

@@CrystalCat24 let's focus on not telling complete strangers how to refer to their own children and mind our own business. Let's start there.

[@aliciasmith3078]

You saying “we are doing the most for Lucy”-that’s how love works 💛

[@illbeyourwendy]

Crying

[@SuperLaLaLaurennn]

As a 26 year old with a rare disease this hit home. My mom and I have such an amazing bond. She has always gone to bat and has “ done the most” for me. Lucy is so blessed to have you as her momma! Thank you so much for sharing your story so far!

[@riv05060]

Thanks so much for this update, we’ve missed you terribly! Lucy is amazing ❤

[@tiffanysepiphanies]

I was going to comment the same thing, so, ditto 😊🫶

[@doseofdicamillo1811]

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❤️

[@lyniecrompton1190]

Hope alls still well guys, get well soon sweetheart.xx

[@OddlyMaison]

Leighann, I can’t even fathom how incredible of a fighter and a mother you are. When you said that you never compare her, I truly lost it, so many people would kill to have a mother like you and an advocate as fierce as you. I’m so sorry that times have been so dark but you are changing the world and Lucy’s world. Sending love and strength always.

[@CharlyeHebert]

Not me bawling my eyes out. Lucy, you have so many aunties who love you so so so much! We’re happy you’re here! Welcome to the world little baby.

[@dearhaochen]

When you said she’s one year seizure free, I cried so hard with such joy!!!! Bless you, Leigh Ann and little Lucy!!!

[@jalyngraham6090]

Once the dust has settled don’t forget about the reason why Lucy is here in the first place. Because the two of you fell in love. Always nurture your relationship first ❤. I’ve seen so many couples forget about each other during these difficult times.

[@brandiehunter6589]

As a NICU nurse im so glad you trust your gut and mom instincts! A lot of times parents are scared to voice their opinion.whenever a parent expresses their concerns to me I ALWAYS listen to them because they know their kid better than I do. So glad Lucy has you to advocate for her! She’s the cutest ❤️

[@Steph.Mama0321]

What a Christmas gift! The story of the sweetest little CEO

[@cristinagarza1068]

“We love her timeline” ❤❤❤ Such a beautiful and helpful perspective to have as a parent! Also, oof when you said “this is why I’ve built my platform”, chills! ❤ Wishing you and your family nothing but the best!!

[@chuuu_beth]

So much love for you guys. As a 31 year old with a rare neurological condition myself I know to some extent what the life you guys have is like. My parents were told I would never do things like walk or drive or ride a bike and I now do all those things and more. Yes life has it’s challenges but I don’t let them get me down and I’m sure you guys will bring Lucy up with that attitude too! Merry Christmas to you all! And thank you for sharing this update on your precious baby girl ❤

[@kristenreese5839]

Rare Disease mama here! I have two sons with an ultra rare genetic disease called Cabezas Syndrome. It's caused by a mutation in the CUL4B gene. We are 2 of about fifty or so families in the ENTIRE world that have been diagnosed. I felt every single word you said in your video to the core and couldn't hold back my tears. ❤❤

[@PepperAnnT]

❤❤ 😢

[@ashleycfrey]

I have epilepsy. I had my first one in my early 20’s, and I still have them today. I had uncontrollable seizures, I was unable to drive for years. After many test many doctors they are controlled (as controlled as I have ever had them) and now they are just nocturnal. I am married, I have 3 kids, and I can drive. I have had seizures everywhere from Disneyland to restaurants to massages. It’s embarrassing, but you have no idea what great things you are doing by bringing more awareness. I always say my epilepsy is harder on my husband than on me, any little move I make and he is jumping up. I can never imagine what it’s like seeing someone going through it. You are such a fierce advocate, she will do great things!

[@jenniferrosas2942]

Leighann, I am someone with a rare genetic and neurological disorder. I also have epilepsy. I admire your strength and appreciate your authenticity. My mom advocated for me just like you and your husband are for your daughter. I know it’s been emotional but you’re a strong person full of love. I wish you all the best. Thank you for being so open and sharing your story x

[@katie7722]

I think there is a stigma around influencer that suggests they're all super dramatic and narcissistic. I never got that impression from you, but girl, you are showing your strength now. KZbin was such a big part of your life and you dropped it so fast and so fully to be 100% there for your baby. You have walked and are walking a difficult road, but you're so brave and strong. I'm sure you have weak days, but I appreciate your positive outlook and genuine smile. Mostly, you just radiate with love for your family, Lucy especially, given the nature of the video. So many KZbin moms act like their healthy kids are a burden. I, myself, have struggled with that a bit today even, but if you can get up tomorrow with a smile on your face and treasure time with your precious baby girl and give of yourself for her benefit, I can get over the earring my healthy daughter lost today. Everybody calls me super mom because I guess I look like I manage my family (if they only knew!), but you put me to shame. Many prayers and much love to your precious Lucy, and to her sweet, strong mama.

[@lisahall7803]

Such an incredible story. Lucy is lucky to have two very strong parents and I love that you never questioned “why me?” Instead you have taken this as your calling in life and it shows ❤

[@kimberlyflewell-smith8769]

Wow your mindset and attitude should be applauded. ❤❤

[@natali9881]

Just seeing this for the first time. I missed you so much while you were away caring for sweet Lucy. Lucy's Light!

[@devynproctor]

I knew I was going to cry when I finally heard Lucy 's story (and I did) but I'm also so inspired by her strength and your love for her. Thank you so much for sharing 💖 I work in clinical research at a pharmaceutical company that has investigational products in oncology, neurology, and rare diseases - hearing stories like this gives me so much inspiration to work harder so people like Lucy get the treatment they deserve

[@sagitteaius]

Congrats to Lucy for being 1 year free of epilepsy!🥳 Lucy is so lucky to be born into a family that loves her sooo much!💕

[@bailleymcfay8050]

As a NICU nurse, your story breaks my heart but at the end it warm my heart as well. Your love for her shines through so bright. You and grant are the type of NICU parents we love to see! You are doing everything possible to help Lucy! ❤ keep moving mountains Lucy! You sure are a miracle!

[@andreagrange2907]

As someone who now works in genomics at a children's hospital and has a cousin with a rare disease, thank you so incredibly much for sharing your story. I am so happy that you have found an incredible community of people experiencing the same thing. That is going to be so impactful to you, Grant and Lucy. You are completely correct when you say you were put on this earth to build this platform and spread awareness. I truly believe that God knew what he was doing when he made you Lucy's parents. I am wishing you all the best and look forward to seeing Lucy continue to grow. Also, congratulations on one year seizure free, Lucy!!

[@Whocares302]

Awww we love you Mamaaaa!!

[@Limehec]

I'm half way through and in tears, not just about the story which is not at all what I was expecting... But your strength 🥺 Being a mom is tough enough, you're doing amazing!

[@danalong8632]

In tears! As someone who was diagnosed with a very rare incurable disease in childhood, I felt so many emotions watching this. Lucy is so blessed to have you and Grant in her life. Her light shines in every post you make of her 💛 So many prayers going up for all of you!

[@Styledandorganized]

My gosh, the love, encouragement, positivity and gratefulness in your words literally made me cry. You’re not only the most perfect mama to Lucy, you’re also an amazing human being in general and the light you radiate is just unmatched ❤️ Lucy is the sweetest little princess and warrior and she’s just perfect. She’ll surprise you and every doctor and everyone else with how much she’ll achieve in her precious life, you’ll see 🙏🏻 sending lots of love to your cute family and definitely donating money as well ❤

[@fusionpunk1346]

God, watching this made me so angry at myself for complaining about my typical kids. I can't imagine what you've been through. I started crying halfway through, just putting my mom heart right where you are, I just couldn't handle it listening to you talk. I'm so glad she is doing so amazing and she is such a beautiful little girl.

[@Sarah.reads.sometimes]

You’re allowed to feel how you feel, whether or not your children are disabled! Parenting is hard either way ❤

[@jessie9539]

You are the most wonderful mother to Lucy ❤️❤️❤️

[@irunova]

I'm a nurse and have been a nicu nurse, as well as a peds icu nurse. My heart just shatters at this story. I have seen so much pain and heart ache. You are such a strong mama. You and Grant have learned to lean on each other for Lucy and her well-being and that is so beautiful. I lost my baby boy this March at 27 weeks and I have felt the heart wrenching moment. I am praying for you and your sweet Lucy. Kiss her extra million times from all of us ❤

[@ermfine2]

I’m so sorry for your loss. 💔

[@Jillianrc]

I’ve been a long time viewer and became a mom since you’ve been gone. Hearing you talk about Lucy’s early months had me bawling. You were definitely chosen to be Lucy’s mom, and you’re doing a great job. My sister was born with spina bifida back in the 80’s, and my mom was told she wouldn’t make it past her teenage years. She’s doing amazing in her 30’s, working, driving, living in her own apartment and is just the funniest personality I know. Her wheelchair hasn’t stopped her one bit. Lucy can and will do incredible things!

[@colbystark8208]

As a epilepsy warrior it warms my heart to know you instinct was to record the seizure that was the best thing you could of done!! WOOOHOOOOO congratulations to that HUGE milestone of 1 year seizure free!! She is so precious 💕 I just hit my 7years seizure free this year!

[@msrose312]

I got it at 58 years have still at 61

[@daniellestephens4881]

Been watching since you still lived at home and you loved big Texas hair. You’ve always been the most genuine and realistic KZbinr, and this is no different. So sorry you’re going through this but it’s so inspiring to see you so strong. Lucy is in the best hands with you guys! ❤

[@rebeccahesser8057]

Lucy is so lucky to have parents like you and I see what a blessing she has been for you!! Prayers for your family!!!

[@kacarro1]

My husband and I felt this so deeply. Our son was born at 29 weeks and he spent 76 days in the NICU. It was like nothing existed outside the hospital. He finally came home in November. He suffers from severe reflux and is in pain every time he eats. It is so difficult watching your child in pain. As a parent you would take every ounce of their pain if you could. Things are slowly getting better.

[@kaylaboyle8106]

You’re whole life leading up to this was laying the foundation for Lucy and people with the same genetic condition as her. I’ve grown up with you,you were the big sister I never had,and Lucy is the light I never knew I needed. She is truly amazing, since the watly fays,since Grant, since everything,its been leading to her. Im so happy for you and Grant,and happy to love Lucy in all forms. I’m so exicted for what the future will hold,and we will always be a support system for you,her and Grant. This is how love works ❤️ Magic 🎉❤️

[@lindsayscripp1959]

Missed you so much! Having you back is an early Christmas gift! 🎁❤️🎄

[@lpm827]

What a beautiful family 🩵🩶🩵🩶🩵

[@stefishock]

I had to stop the video a lot…to wipe my tears, not of sadness, but the overwhelming realization that wow what an incredible mother and human being you are Leighann. I’m so so glad I clicked that subscribe button 7-8 years ago. I love you so so much guys, cannot wait to celebrate milestones throughout your journey

[@Jeffersonmorant.]

That’s so thoughtful of you, Thanks for your positive review,How are you and how’s the weather over there?

[@melissamatthews6174]

You were made for this! Lucy hit the jackpot with the best mom and dad to care for her and provide everything she needs to be successful. I am a home health nurse that works and care for children like Lucy in the home for 10-12 hour shifts in the home. I know how stressful and how intense it is to live “that life” as I’ve seen it with all the families I’ve worked with and you’re doing AMAZING!!!

[@anwenangharad13]

Donated! You have no idea how quickly I clicked!!💜 I’ve been here watching for over 9 years and I’d have waited 9 more years for this video but I’m so glad it’s here now! sending so much love to you and the family and GO LUCY, YOU’RE AMAZING!💖xxx

[@jordanheltsley1757]

I’ve been watching you since you lived in your old apartment and I’ve loved your journey so far. Sharing Lucy with us is such a kindness. She won the lottery with you as a mom. Forever eating cookies for Lucy. The CEO of everyone’s heart.

[@MirandaM450]

Romans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose. No matter what gets thrown our way God will use it for good and you are speaking to so many moms and dads that have experienced similar or even not. How life can be/change and how much to appreciate exactly what you have in the moments. Lucy is such a blessing and so are you and Grant!

[@samanthapierce-ds7gd]

I can't believe it's been almost 2 years since you started posting again. Which is crazy bc I felt like the year and a half you weren't on youtube (obvi rightfully so) was so much longer. I found myself wondering about your family and sending good vibes often! All to say I'm so glad you're doing well and congratulations on your new addition! TWO GIRLS! How sweet!

[@stephanieauker1162]

I'm sitting here just trying to think of what to say. So many thoughts! Well first, you positively glow when talking about Lucy. The love just radiates off you. Your positive attitude about this development is amazing. I especially loved when you said that you and Grant respected Lucy's timeline - such a healthy and realistic way to approach life. Lucy's a total doll. Nothing but positive thoughts, vibes and prayers for the four of you.

[@AngHub246]

As someone who’s watched you since around the time of the pretty dirty princess bun video, I’m so happy to see the amazing woman & now mom that you’ve become! Lucy is lucky to have you in her corner. ❤

[@callmeclaireee]

I made so many cookies for this baby and I’m so happy she’s here. And not to compare her to a pet but my girl Lucy passed away in 2020 from cancer so when I found out you named your girl Lucy is made me so happy. Lucy was literally the light of my life and losing her was so hard. She was a ferret but everyone who met her said she was so human and so special. I’m so happy you have a Lucy in your life now 🥺🖤

[@DriftlessReader]

Mom instincts are a REAL thing!! Good for you for advocating for your baby girl 💗

[@tiggerxallie]

As a pediatric nurse that works heavily with a population similar to Lucy, you are doing amazing Momma ❤

[@overeasymilk]

Lucy is so blessed to have you both ❤️ You were meant to be her parents

[@ADF200]

❤️❤️ to everyone in the comments who shared their stories too. You are seen and heard. We are rooting for all of you. Thank you for making this video, this is really important and I hope we can all help miss Lucy and other people. ❤❤

[@lynnray1271]

OK now I'm crying. I'm the mom of a very special 14-year-old boy with autism and severe intellectual disability. I could relate to so many things you were talking about ❤ lots of love to you, Grant and of course sweet sweet Lucy ❤❤❤

[@StyleMeMona]

No words, you and your family are incredible ❤️

[@melcrossland]

There is nothing in this world that will ever compare to the amount of love we feel for our babies. Lucy is so lucky to have you both as parents

[@emilyl3059]

While I am not a mother and can not even begin to imagine how the past months have been for you both, this video had me in tears. Theres no two people in the world who could be better parents to Lucy than you and Grant! The story of Lucy is so special, thank you so much for sharing it with us ❤

[@ArielRenee21]

I’m 5 minutes in and already crying. Leigh Ann, Grant, Lucy, and Luna, please take all the time you need for your family. You guys have fought so long and so hard to have this sweet girl, and we love your family. Sending all the hugs ♥️♥️♥️

[@chelseamag3125]

As someone with a rare form of epilepsy, experiencing my first pregnancy and full of all the nerves and emotions, thank you for explaining everything so clearly and being so honest with us. You are incredible! I'm so glad you're all safe and taken care of right now ❤

[@babieswhobrunch]

Leighann you are INCREDIBLE!! Nothing in this life is random and you were hand picked to be her mom and you are so amazing

[@carolynflock3814]

Lucy is beautiful, so wonderful to see you embracing and celebrating the diversity of human kind. Bless you and your family ❤️

[@elisabethbuck6578]

As a NICU nurse at a level IV... you are so incredibly strong and I am so proud you both as NICU parents. Sending you all best wishes and love

[@karmakauffman7445]

Thank you so much for this update! We’ve missed you soooooo much! Also, as much as we’ve missed you, we completely understand why you’ve needed to be away. Lucy will always be your priority and that is the way it should be. This video has had me in tears and there are so many things I’d want to say, but here are just a few thoughts: You are an amazing mom! It seems like you have become so strong and confident since Lucy was born and it is obvious that she brings you so much joy and purpose. The journey that y’all have been on is incredible and I’m so glad that Lucy is doing so well! You’ve both done so much work and I know you’ve got this; you’ve proven that time and time again. Sending you all love and light and prayers. ❤

[@laurenmorris4652]

You were MEANT to be her mama! What a powerful, strong little girl who will help change many lives one day. ❤ What a blessing little Lucy is to the world!

[@kaytiemyers2698]

My daughter has special needs and this reminds me of our story she had feeding issues,feeding tube,genetic 2p22.3 micro duplication ,and now an ASD 1 secondary adhd doagnosis

[@kaytiemyers2698]

Was in NICU 6 weeks and pediatric unit multiple times. Mainly hospitals multiple.hours away. Therapies every week ,weight checks multiple times a week. Just alot.

[@dsssnails]

Thank you 🙏🏻 stay blessed 🥲 God keep you guys healthy for long life’s ❤

[@twinklybones8952]

i’m only about 2/3 of the way through and what an amazing story, cannot believe how much you’ve already done for Lucy at such a young age. you’re her advocate for life and she is going to be so so grateful for everything you and grant do for her 💛

[@brenda8538]

She’s truly the best mama.

[@slb9645]

My SLP heart is exploding with how well Lucy is doing! We love to see our NICU babies thrive!! ❤️

[@srokachannel]

Thank you for speaking out about it. I’m a rare pediatric diseases researcher and spreading awareness is such a key element in the search for a cure!

[@ermfine2]

If Lucy had to have this she’s got the best Mom & Dad humanly possible. That little cutie pie is going to be fine. CHOP is great and Philly is a great city. I live 20mins outside the city and it’s lovely. I wish you guys all the best in the world.

[@JCKCFOREVER]

The way your face lit up talking about how you know that your purpose is to be Lucy’s mom and to be an advocate for her and raise awareness for stxbp1 brought tears to my eyes. There is no one more perfect for the job 🤍 thank you for sharing your story with your KZbin community, we’re here for you and we love you and your precious family!

[@xcluelessbeautyx]

As an adult with a rare genetic condition I just wanted to say that Lucy is so lucky to have y’all advocating so hard for her so early. It’s going to be a long road of that, but I believe in all 3 of you. ❤ CHOP is wonderful and I’m thankful you were able to get her in. Hang in there momma, youve got this!

[@jackiesue3891]

Thank you for taking the time to update us....Lucy is adorable and she has the best mommy and daddy she could ever have wished for! You're a beautiful family.

[@brendabow2426]

Lucy picked you to be her mom because she knew you and only you could give her all the care and love and support She would need. She’s so incredibly lucky to have you as her mom and you have an amazing outlook and attitude about life even with difficult diagnosis lucy was given. Your positivity and kindness inspires me to always see the good in situations and to stay positive. Our daughter was diagnosed with autism and there are good days and challenging days and although it’s a different situation, listening to your story reminds me that we need to be grateful and thankful for each day we have with our kids. Love you and your adorable family.

[@CrystalCat24]

This is an amazing story, thanks for sharing! And thanks for vlogging WITHOUT exploiting your child! I hope you continue not showing her as the main part of your videos! Best parenting ever!! 💕💕💕

[@brookewatson9531]

I don’t know why but when you said “you know us, you me and you’ll meet Lucy” made me tear up. I watched your journey and your fight to have a little baby and now Lucy is here and she is so sweet. Leanne and Grant, Lucy is so lucky to had parents like you❤