This is our story - STXBP1
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- เผยแพร่เมื่อ 7 ก.พ. 2025
- 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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Some may call this bravery, some may call it courage, but it’s really pure and unfiltered love.
Bravery and courage are the same thing…
@@MarleeCM 🙄
It’s what keeps the stars in the firmament ❤ Great job to both parents and Lucy ❤️
@@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.
Sweet comment!
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!
Thank you for all your incredibly hard work! ❤❤❤
My daughter goes to CHOP for dermatology and I couldn’t love the staff there more. Truly amazing.
Amanda, we go to CHOP for our daughters hips and you are all ANGELS. Thank you for all you do
Chop is amazing top to bottom!
Thank you, Amanda - to you and all the staff at CHOP who have helped my daughter through the years. You all are Angels. 💜
Also and I say this with every ounce of meaning I can - “That’s how love works, (Mom)❤️❤️❤️”
Sammmmeeeeeeee
😭🥰
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 ❤
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. ❤️
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.
1:24 1:25
@lilacks1 1:45 7
She looks like her dad, ❤❤❤❤ we love her, she is lovely, Lucy Lovely, Lovely Lucy
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 ❤
Yes!
❤
Yes! Felt the exact same way. Fellow Mama to a sweet girl with special needs ♥️
Same! ❤
The
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. ❤️❤️❤️❤️❤️
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!
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.
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.”
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 💙
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 TH-cam! And thank you for you spreading awareness on rare diseases!
Beautifully said.
yuck
AMEN ❤
Lucy is the product of intercourse between her mother and father. Nothing whatsoever to do with 'God hand picking her'. 🙄🙄🙄
@@Ikissmyself I think that yuck was meant for you
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.
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😊
❤
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.
Absolutely no one knows Lucy better than you do. In all your IG pics she looks like such a sweetie 💜💙💚💛🧡
Did you take any medications while pregnant? Or get any shots? Honestly question. Praying for your daughter and family!
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. 💜
yes and DYI videos too
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.
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.
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!
As a pediatric speech therapist, Lucy is so lucky to have you advocating for her. I can feel your love through the screen 💛
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!!
Thanks so much for this update, we’ve missed you terribly! Lucy is amazing ❤
I was going to comment the same thing, so, ditto 😊🫶
I’m friends with your parents and know Lucy’s story from them, but now I know you, too! You’re amazing ❤ God picked you and Grant specifically to be Lucy’s parents. She’s so blessed! ❤
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 💓
Could not agree more, perfectly said!
AHHHHHHHH SHUT THE FRONT DOOR LEIGHANN, I'm literally gonna cry!! I'm so happy to see your face again!!
Same!!!
same!!!!!!!!!!!!!
Same!!,
💯
Same!
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!
Well said ❤
I always think of the dirty hair princess messy bun while I think of early LAS videos
Couldn’t agree more ❤
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
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.
God bless baby Lucy… you and Grant are great parents! We really missed your family and Luna Bean! 💕💕💕💕
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 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!
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 ❤
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! ❤
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 :).
She is such a doll look at her hair goodness 😍. U are blessed and so is Lucy, to have you 💖
Wow finally on TH-cam
Howdy and Hugs from Houston❤
You saying “we are doing the most for Lucy”-that’s how love works 💛
Crying
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.
What a Christmas gift! The story of the sweetest little CEO
You killed me. I could not stop crying. Hope for the best for Lucy! Science is trying to get this one done for you!
Just seeing this for the first time. I missed you so much while you were away caring for sweet Lucy. Lucy's Light!
When you said she’s one year seizure free, I cried so hard with such joy!!!! Bless you, Leigh Ann and little Lucy!!!
“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!!
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
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. ♥
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 😊
@@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.
@@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. 🤗
@@TACOinFLORIDA002 labels and arguments about labels are ridiculous. Just stahhhhppppppp..... And focus on love and awareness without stressing about labels. 😳
@@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.
You’re so right, I think your true calling is to help Lucy and others diagnosed with STXBP1.
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 ❤
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
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 ❤
Why did I cry when I heard the meaning of her name ❤❤❤❤ bless you bless the family
Thank you to Grant for bringing Luna Bean. I didn't know my heart needed to see the entire family together! ❤️
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!
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. TH-cam 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 TH-cam 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.
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!
I got it at 58 years have still at 61
Glad to see you back 🤍 lucy is adorable mashallah 😫🤍🤍🤍..
God bless you and God bless little Lucy!
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 ❤
I’m so sorry for your loss. 💔
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!
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!💕
Omg . She posted 💞 ! We all love you!
You are Lucy's angel❤❤❤
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!
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
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!
Wow! Just under $66,000 raised in just over 1 month. Astonishing! You will certainly meet and then subsequently exceed the $75,000 goal in the next month, I just know it!!
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!
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.
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!!!
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.
👋👋👋 Fellow NICU mumma here! My little girl was born at 27 weeks at only 1lb 2 ounces, we spent the first 9 months in hospital, 5 months in the NICU and another 4 on a gastro ward. Along with a wide range of premmie issues her major set back was NEC which she ended up requiring 2 seperate surgeries and the removal of about half of her small intestine, her appendix and IC valve. As a result she developed short bowel syndrome and needed to undertake instestinal rehab and adaption through intravenious nutrition. The NICU was absolutely the hardest thing I have ever been through in my life, I couldn't tell you how many times I thought we were going to lose our sweet girl, but with every setback she fought so hard. As terrifying as it was I also think it has my daughter the person she is today, and I wouldn't trade that for the world. These girls of ours are meant to be here and we were chosen to be their mummas for a reason! With our love they will move mountains! Xo
Lucy was the only embryo from that first round of IVF and you chose her for implantation. You fought for her when she was only a cluster of cells and you will continue to fight for her. She is so blessed to have you and you are so blessed to have her, maybe not in the traditional expected way a couple is blessed with a child, but you get special different blessings that others don't get to have. That bond will be unbreakable x
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 ❤
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. ❤
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.
Sending you ,your hubby & the adorable Lucy ❤❤❤
& 🌹🌹🌹🌹🌹🌹🌹for the super Mom in you✨️🌻
Prayers are limitless. God has given you the baby you are meant to love. Your love for your baby is bigger and more powerful than anything.
As a pediatric nurse, I love so much that you found your voice as a mother from the very start. I would bet that it has made a world of difference for Lucy’s course of medical care.
Been a viewer for many years and I admire and respect your courage and strength.
We love you so much! Glad to see you back, no matter how infrequently that may be.
Missed you so much! Having you back is an early Christmas gift! 🎁❤️🎄
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 🎉❤️
Oh you guys! Bless you both, bless your house! If living Luna bean and her 3 legs wasn't a call to your future I don't know what is! We all knew you were a special human, that you found a special human I. Grantaroni. I am absolutely positive you are right where you are meant to be. She is perfect and I am here beside you as your champion mamma! Go get the world !
God bless you, and God bless sweet precious Lucy. Holding her in prayer.
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 ❤
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 ❤️
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. ❤❤
❤❤ 😢
She is such a little Grant!!! 💜🙂
YOU are a literal angel on earth. God gave you Lucy and He gave Lucy you for a reason. Tons of love to you all.
Lucy is so blessed to have you both ❤️ You were meant to be her parents
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 ❤❤❤
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!!
What a beautiful family 🩵🩶🩵🩶🩵
You are a very special person. Lucy is blessed to have you and your husband for parents. Will say prayers for your family!
Sending my love Leighann. I haven't followed you in years and I just recently thought of you so I looked you up. Coincidentally, I have a 15 month old and he also went through a tough first year of life. He was diagnosed with Chromosome 4q Deletion which has a lot of similar symptoms as what your baby is diagnosed with. He has/had seizures, its incurable, happened denovo, hypotonia, aspiration issues, rare, delayed development, very similar to a lot of what you described.
Every feeling you described I felt it all. Every event you talked about I was there breathing every moment. Every situation you shared I lived it for months. It's so real. So much. No one understands unless they've lived it too. I lived in that world and I still do.
Sending so much love 💕
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
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 💛
She’s truly the best mama.
God Bless you all ... Hugs & Prayers 🙏🙏🙏
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.
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
That’s so thoughtful of you, Thanks for your positive review,How are you and how’s the weather over there?
You are the most wonderful mother to Lucy ❤️❤️❤️
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!
Rare momma hugs! My son has a de novo deletion. You are such a great advocate for your baby!
Thank younso much for the update. I have missed you! Bless little Lucy...she couldnt have a better mommy and daddy.
❤️❤️ 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. ❤❤
Been watching since you still lived at home and you loved big Texas hair. You’ve always been the most genuine and realistic TH-camr, 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! ❤
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 ❤
I have missed you so so much. You are a wonderful mum and Lucy is gorgeous. Love you ❤️❤️❤️
I bawled my eyes out. I have watched you for years. Your family is beautiful and you are a wonderful mother. ❤️