Tori was a complete doll baby.. Her eyes were the biggest and prettiest I have ever seen.. God bless her parents., her grandparents and the twins.. This was a beautiful tribute to Tori❤
I lost my middle daughter in July 2020. She was 39. She struggled in life. I was glad to have her even though she had challenges. I miss her horribly. It is a blessing even with challenges.
I too lost my 3rd son in July of 2020. He struggled mentally his entire life. He was 35 when he was released from pain. Life will never be the same, but it goes on… 💔
What a truly gorgeous little girl Tori was, so so special and so so loved. Fly high and free little angel, you were too special for this world. Love, thoughts, and prayers to her wonderful parents and grandparents.
I always believe children with serious illness sometimes are born into a family who cope and they dedicate the time for their pecious child. I wish you all the special time you need with Tori.
This couple is amazing. I know from life experience that it's is very uncommon for the father of a baby this ill and the required constant care, to stay. And to be so involved with all the caregiving required for Tor is life. He is an incredibly awesome man. Mom also is very amazing. This little baby was lucky to have these parents. God love all three of them and all the extended family and support.
I followed you on your blog throughout your journey at the time. I cried with all of you the day she passed. I’m so happy to hear that you have been blessed with twins. Tory is watching over all of you.
.this is heart breaking tori was a beautiful baby had lovely eyes so sorry for mom and dad and family so sad so happy that you have been blessed with twins tori is watching over all off her family she is your angel rip
Patrice Kenna thank you for posting that because I don’t think people know that. I am truly happy for them and it’s nice to know that they have been blessed with twins.
Tori was so adorable....I'm sorry she lost her fight. She has her wings now and will always watch over you with love. God bless you both and congrats on your twins ♥️🙏💜♥️🙏💜
Both of you, Tori’s grandparents and Tori shared an amazing journey! Your love for Tori and each other is so special and beautiful! Thank you for sharing your journey and for letting us know Tori, sweetest angel. Sending the biggest hug and Blessings ❤️🙏🏼❤️🙏🏼❤️
Tori was given a lifetime with you because you loved her so much. All I can say is God gave her to the right parents and grandparents. You are 4 of the most precious souls I have ever seen. Please don’t give up. What you are doing for all the babies is just amazing. God Bless you all. I’m so impressed with you. I am so sorry this Evil disease exists. You are in my prayers. Man those eyes are so beautiful. I just want the right words. God bless you 💖💖💖💖💖
I guess when you start to watch a video like this you want to think that there is a "happy ending" and then your realize the triumph is what she brought to the world of this disease and the blessing of having two amazing parents.
What a beautiful angel... i am so sorry for you loss. Very impressive parenting, i commend you both. Also love that her grandparents involvement and support. Wow! Her beautiful eyes...
She was so precious. The video of her awake, talking to her mommy, melted my heart. Life, sometimes, is so unfair. You have to be the strongest couple that I’ve ever seen, God Bless You! Rest, precious Tori.
Such a heartbreaking story of such a brave young couple and their beautiful baby girl. I wish them love, joy and comfort. Thank you for sharing Tori's story.
I just LOVE the love that her parents and grandparents had and continue to have for Tori. She is so loved 💖. Thank you to the family for having the courage to relive their painful story to bring awareness about this horrible disease to others. May God give you all comfort and bless you always! 🙏🏼
God bless you all and baby Tori. She’s now an angel 👼. I’m 10 minutes from Hershey Pa and my daughter goes to Hershey med for chronic neurological Lyme Disease and Bartonella. Please keep fighting for new screening. Great documentary. Tfs your story. Hugs 🤗
Such a beautiful little girl, with the most expressive blue eyes I have ever seen. I am so sad for this family. It is so unfair. My eyes have no more tears
You are wonderful parents who have walked through a very sad Journey in life. Tori was a blessed little girl to have such wonderful parents and despite the sadness of losing your little one what you are doing to fight this cause is incredible. May you be blessed with much joy and happiness in your life.
The love you have for your beautiful Angel is AMAZING, she's so lucky to have you as parents,her story is so emotional and I think you guys are so wonderful. She's a true angel.
Thank you and your family for sharing this very intimate and also beautiful story about the gift you were given, Tori. I'm so glad you had each other, your parents, the doctor and staff taking care of Tori, and of course the wonderful community of other families who themselves were, or had been dealing with babies afflicted with Krabbe . I pray that you experience the comfort and love from He whom is the ULTIMATE COMFORT AND LOVE. I pray that you will be instrumental in the healing of hurting hearts of others who have loved ones afflicted with Krabbe. I will continue to pray for all of your family and the others who are also going through this pain. May the Lord comfort you, and bring you peace. 🤟🏼🙏🏼☝🏼❤
Thank you for sharing. You daughter Tori was absolutely gorgeous, watching your video touched me so much, and I will not forget those big beautiful eyes. She got to experience so much love in her short life.
Congratulations for your effective sharing of your daughter Tori's life, the love and honesty you depicted as well as your ongoing fight for future babies.It's unacceptable not to test so babies with this and related conditions are spared extra suffering plus parents and babies enduring suffering until a belated diagnosis is made. Furthermore it allows parents to promptly be prepared to access ways of not ending up with other children inheriting this condition.
I don't normally comment, let alone finish one of these type of videos, its too difficult. But...it's Tori. I love her. What an angel, what a gift, what a perfect little one. You two are my hero's as is little Tori. Your courage, your strength is just so deep and genuine. You guys are really what "life" is...goodness, hard work, love, family. God has you all in His hands.
I am so sorry for your loss. She’s beautiful! I m going to Hunters Hope right now to do my letter. I live in Virginia Beach. I am praying for more grand children so this obviously is very important to me! Keep up the great work! I will never forget your Tori!
So sorry, you guys did all you could just like any parent would, Bless you guys for holding your cool and not giving up she had a wonderful life and hope this don't stop you from having another child it will help mend the heart.🦒
You both were mean’t to be there by her side. You gave her soo.. much love, compassion and so many memories. Your daughter, had so much “loving care “ around her everyday! I know God was there with you all, along with his angels being there since she was born. Tori had some real special parents and grandparents. God bless you all. 🙏🙏
I’m so sorry your family had to go through this. You have a Gorgeous Angel 👼🏻. Thank You both so much for sharing Tori & her story with us! I feel honored! Your daughter is so Beautiful💜
This was so beautiful and heartwarming. What a special little girl and the best parents ever! The picture in Mommy’s wedding dress just made tears run down my cheeks. 🦒🦒🦒🦒🦒🦒
4 years later and I just watched this again. I have children in their 30’s and grandkids, and I am so thankful they are healthy. My heart goes out to these parents. ❤
Looks just like Dad. Mom, you're right , parenthood is NOT for wimps. My heart breaks for your loss. I am so happy you had her. The love, the joy, the hope. She was the best and worst you will experience. And you still are here. Your story, and the courage and compassion with which you share your journey, will touch and help support other families. It changes nothing for you. But it will be everything for another family. Thank you. God bless you and keep you. You will be together again. Because the love NEVER ends! NEVER.
Can't make much of a comment because you both said it all!!! What a beautiful little angel she was. Congrats on the twins. Am now going over to Hunters hope....I have no children but no baby needs to endure that and neither do the parents! God Bless!
So sorry that your family lost such a beautiful soul. You were smart to let everyone be able to hear about this from the very joy of her birth. Life was so good, then later, you knew little things were different. Wishing love and only smiles in your life. A broken heart never goes away, but you learn to live with it. You are always her Mom and Dad, she is your daughter, always, remember that joy of her. We are so thankful you shared your daughters story.
This baby is such a sweetheart , so sorry for your loss I’m hoping with the birth of your twins that everything has turned out well I’ll be praying for yawl and sending much love to you and your family It’s such a precious thing to have family around to help out and your folks seem like wonderful people as well God bless
God bless these parents and the mother's parents too. Family is everything. And its amazing the lobbying you are doing against the LD's and Krabbe's. I am sure Tori is so proud of you. My deepest condolences and congratulations on the twin boys!😀💖
I can't imagine the HEARTBREAKING pain the both of you went through! I seen all the LOVE YOU and TORI'S GRANDPARENTS gave to her..I give you ALL so much RESPECT for fighting for other families and their babies to be able to have the opportunity to have mandatory screenings done, so maybe their child will have a chance to live a normal healthy fullfil full life!! TORI was a BEAUTIFUL A👼GEL here on Earth, who touched so many H💝arts. Now she is HOME with her HEAVENLY FATHER, FLY HIGH B👼BY TORI!! Much Love, Peace and Happiness!
It is with heartfelt wishes that God will sustain you! Many prayers and concern, and comfort are being given for you and your family. May the Lord continue to hold your tightly and give you his peace!
Heartbreakingly beautiful💔💗 She is such a gorgeous baby. 💜Thank you for sharing Tori with us..and your family’s story. Thank you for your continued fight for Krabbe families. Tori has touched so many hearts and lives..your continued fight will help so many.
Thank You for sharing your beautiful little girl with us.. I am so sorry for your heartbreaking loss.. Leukodystrophy of any kind is such a horrible disease and I will never understand why they do not find it important to screen for it. My niece was born a beautiful normal little girl, and it wasn't until she was old enough to walk but wasn't walking, that they decided something was wrong, she was misdiagnosed at first but after her first birthday she was diagnosed with Metachromatic Leukodystrophy (MLD) .. She has really regressed as she gets older however her mother is the most amazing woman I know and spends every minute enjoying the time she has with her.. she is now 6yrs old. and although she does not walk , talk, eat or many other things that I wish she could do.. one thing she still does is smile. I thank you for your fight for these babies. and Im so so sorry you had such little time with your sweet girl..She is so beautiful.. I know she is shining her love down on her Mama and Daddy and grandparents.. As I truly believe the love never dies, it goes with you .. .. Hugs and Prayer from across the miles.
What a heartbreaking story but you are so strong to share it and keep fighting. She was a beautiful and strong little girl just like her parents. I read in the comments that you have been blessed with the birth of other children, that made my heart smile, you are amazing parents. ♡
I understand the feeling of peace, iv experienced it b4 when loved ones have passed away and if they suffer b4 they pass its strange but u really feel okay and are thankful that they dont have to suffer anymore, you still feel pain and sorrow and most all other feelings of grief! The dad said it right when he said of coarse we still want her here but that our selfishness cuz she was suffering too much! Im glad i watched this docu on Tori's Triumph because i learnt about a disease that i didnt even know about and how its treatable if diagnosed at birth but is terminal if not diagnosed!
I will go to Hunter’s Hope and fill out the letter. I am praying for the success of your “job” making sure Krabbe is no longer hurting families. You are wonderful parents. Tori was truly blessed by God, as were you. I need to check up on you and your boys.💕
Thank God you were blessed to be able to fulfill the bucket List❤. I pray God will continue to comfort you both & your entire family during your time of grieving ❤ My sincerest condolences❤
Thank you for all your hard work in the legataters and I hope you know how much your story has touched me and so many others... I am so heart broken but I know your strong about your feelings and beliefs. I know that until the end of time you will fight. And I do believe that no child should have to go through this. And she was so beautiful. And strong. Hugs!! And CONGRATS ON YOUR TWINS!!! THATS AMAZING NEWS!!
Tori was a complete doll baby.. Her eyes were the biggest and prettiest I have ever seen.. God bless her parents., her grandparents and the twins.. This was a beautiful tribute to Tori❤
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@@altagraciacastillo3275😊
God bless you
She had her mother's beautiful eyes! Just a gorgeous baby. No more suffering for this little angel!
I think Baby Tori looks so much like her beloved Daddy.
@@brendalohrke2402 me too! No denying she was gorgeous though 😌❤️
I lost my middle daughter in July 2020. She was 39. She struggled in life. I was glad to have her even though she had challenges. I miss her horribly. It is a blessing even with challenges.
❤ life is a struggle, isnt it. I'm so sorry. Been through a similar experience myself.❤
I too lost my 3rd son in July of 2020. He struggled mentally his entire life. He was 35 when he was released from pain. Life will never be the same, but it goes on… 💔
@@jeannelederman8992 ✌️🙏
@@jeannelederman8992 I am sorry for your loss. It isn’t fair is it?
@@marygoff3332 Thanks.
What a truly gorgeous little girl Tori was, so so special and so so loved. Fly high and free little angel, you were too special for this world. Love, thoughts, and prayers to her wonderful parents and grandparents.
What a gorgeous baby!! Her eyes!! 🙏🏾 Always in your hearts ❤️
Those grandparents are the cutest thing I've ever seen.
Tori has to be one of the most beautiful babies I've ever seen God bless your fight and may it be a victorious one
She is an absolutely stunning looking child. This is such a heartbreaking story.
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This is the most beautiful tribute to your daughter. I’m so very sorry for your loss. Thank you for sharing her story ❤️
I always believe children with serious illness sometimes are born into a family who cope and they dedicate the time for their pecious child. I wish you all the special time you need with Tori.
The key word is sometimes...it doesn't always happen that way unfortunately...
This couple is amazing. I know from life experience that it's is very uncommon for the father of a baby this ill and the required constant care, to stay. And to be so involved with all the caregiving required for Tor is life. He is an incredibly awesome man. Mom also is very amazing. This little baby was lucky to have these parents. God love all three of them and all the extended family and support.
I followed you on your blog throughout your journey at the time. I cried with all of you the day she passed. I’m so happy to hear that you have been blessed with twins. Tory is watching over all of you.
.this is heart breaking tori was a beautiful baby had lovely eyes so sorry for mom and dad and family so sad so happy that you have been blessed with twins tori is watching over all off her family she is your angel rip
Patrice Kenna thank you for posting that because I don’t think people know that. I am truly happy for them and it’s nice to know that they have been blessed with twins.
Tori was so adorable....I'm sorry she lost her fight. She has her wings now and will always watch over you with love. God bless you both and congrats on your twins ♥️🙏💜♥️🙏💜
@@annhughes1503 ooooooooooooooooooooooooopooooooooooooooooooooooqR.+
So sorry for ur loss she was a beautiful baby
What loving parents Tori had.❤. God Bless their little angel.
Both of you, Tori’s grandparents and Tori shared an amazing journey! Your love for Tori and each other is so special and beautiful! Thank you for sharing your journey and for letting us know Tori, sweetest angel. Sending the biggest hug and Blessings ❤️🙏🏼❤️🙏🏼❤️
Tori was so lucky to have had you all in her life. You all were off the charts lucky, to have had Tori. She will never be forgotten.🕊💗🙏😘
You are the BEST parents. The Bucket List was amazing, especially wearing Mommy's wedding dress.
July 30th is my birthday also. I will think of this beautiful baby girl Tori every year on my birthday.
Tori was given a lifetime with you because you loved her so much. All I can say is God gave her to the right parents and grandparents. You are 4 of the most precious souls I have ever seen. Please don’t give up. What you are doing for all the babies is just amazing. God Bless you all. I’m so impressed with you. I am so sorry this Evil disease exists. You are in my prayers. Man those eyes are so beautiful. I just want the right words. God bless you 💖💖💖💖💖
Tori’s father is so attentive. What a good guy.
I guess when you start to watch a video like this you want to think that there is a "happy ending" and then your realize the triumph is what she brought to the world of this disease and the blessing of having two amazing parents.
What a beautiful angel... i am so sorry for you loss. Very impressive parenting, i commend you both. Also love that her grandparents involvement and support. Wow! Her beautiful eyes...
Tori chose the right parents clearly! Screen every baby regardless! Love and light from NZ.
Thank you for sharing Tory's story. She was such a beauty little girl God bless you and your family
I was a nanny for a young boy who had same disease. Prayers to the family.
She was so precious. The video of her awake, talking to her mommy, melted my heart. Life, sometimes, is so unfair. You have to be the strongest couple that I’ve ever seen, God Bless You! Rest, precious Tori.
Her big beautiful eyes are so precious, and you have been great parents!
Such a heartbreaking story of such a brave young couple and their beautiful baby girl. I wish them love, joy and comfort. Thank you for sharing Tori's story.
I just LOVE the love that her parents and grandparents had and continue to have for Tori. She is so loved 💖. Thank you to the family for having the courage to relive their painful story to bring awareness about this horrible disease to others. May God give you all comfort and bless you always! 🙏🏼
What a beautiful baby. So sorry for your loss.
The first thing I saw was the beaitifull big eyes of Tori. RIP sweet Angel.
That casket is fabulous.‼️‼️. What an amazing way to go home - IN STYLE and just as unique as she was❤️🧡💛💚💙💕❣️🖤💜💞💓💗💖💘💝💟
Beautiful child. The man who made her forever crib did a beautiful job.
What a beautiful child! Thank you for sharing her and congratulations on the twins!
A truly beautiful baby. She felt all of your love.
Such a gorgeous little girl ,my condolences..
God bless you all and baby Tori. She’s now an angel 👼. I’m 10 minutes from Hershey Pa and my daughter goes to Hershey med for chronic neurological Lyme Disease and Bartonella. Please keep fighting for new screening. Great documentary. Tfs your story. Hugs 🤗
I only have tears for you and your family! You did a perfect job of taking care of her! My heart hurts for you!
She is SOOOO GORGEOUS💙🙏 MAY GOD KEEP HIS HANDS ON HER🙌🙌
Such a beautiful little girl, with the most expressive blue eyes I have ever seen. I am so sad for this family. It is so unfair. My eyes have no more tears
You are wonderful parents who have walked through a very sad Journey in life. Tori was a blessed little girl to have such wonderful parents and despite the sadness of losing your little one what you are doing to fight this cause is incredible. May you be blessed with much joy and happiness in your life.
What an AMAZING STORY!!! Thank you for sharing Tori she's BEAUTIFUL!!!! GOD BLESS YOU!!!
Precious story. So sad but yet so good. Bless this sweet family
this is one of the most beautiful baby I´ve ever seen, and I saw many. Her eyes are unbelieveably awesome.
She is absolutely gorgeous. Amazing, beautiful eyes. RIP Angel XXX :-(
The love you have for your beautiful Angel is AMAZING, she's so lucky to have you as parents,her story is so emotional and I think you guys are so wonderful. She's a true angel.
Such a beautiful baby ! May God Bless you all !!
My deepest condolences 💐 and thank you for sharing your beautiful baby and educating us on this terrible disease. God bless you all.
So happy to hear about your twin baby boys!!! 🙏💓💓
She was an absolutely beautiful little baby, God bless and take care of your precious gift ❤️
You guys made such a difference in her life.
Thank you and your family for sharing this very intimate and also beautiful story about the gift you were given, Tori. I'm so glad you had each other, your parents, the doctor and staff taking care of Tori, and of course the wonderful community of other families who themselves were, or had been dealing with babies afflicted with Krabbe .
I pray that you experience the comfort and love from He whom is the ULTIMATE COMFORT AND LOVE. I pray that you will be instrumental in the healing of hurting hearts of others who have loved ones afflicted with Krabbe.
I will continue to pray for all of your family and the others who are also going through this pain. May the Lord comfort you, and bring you peace. 🤟🏼🙏🏼☝🏼❤
God bless her soul, she's so beautiful! I love the pic of her in her Mommy's wedding dress, that's such a beautiful idea!💝
Thank you so much for sharing your incredibly touching story! May God bless you!
I live in PA,. Expecting my second child, and really appreciate this. What a beautiful family.
Wow what fantastic parents Tori have🙏 Bless you and dont ever stop fighting for this cause. I am danish and was crying when I watched your story💕
Thank you for sharing. You daughter Tori was absolutely gorgeous, watching your video touched me so much, and I will not forget those big beautiful eyes. She got to experience so much love in her short life.
Beautiful child and family! So glad you are believers! You know you will see her in heaven! ❤❤
Congratulations for your effective sharing of your daughter Tori's life, the love and honesty you depicted as well as your ongoing fight for future babies.It's unacceptable not to test so babies with this and related conditions are spared extra suffering plus parents and babies enduring suffering until a belated diagnosis is made. Furthermore it allows parents to promptly be prepared to access ways of not ending up with other children inheriting this condition.
I don't normally comment, let alone finish one of these type of videos, its too difficult. But...it's Tori. I love her. What an angel, what a gift, what a perfect little one. You two are my hero's as is little Tori. Your courage, your strength is just so deep and genuine. You guys are really what "life" is...goodness, hard work, love, family. God has you all in His hands.
The bucket list idea and photos were absolutely beautiful, and I'm sure the memories so much more. 💕
What a beautiful and brave documentory. Thank you for sharing the life of Tori, and your story. Hugs xxxxxx
I am so sorry for your loss. She’s beautiful! I m going to Hunters Hope right now to do my letter. I live in Virginia Beach. I am praying for more grand children so this obviously is very important to me! Keep up the great work! I will never forget your Tori!
What a precious, beautiful little girl.
So sorry, you guys did all you could just like any parent would, Bless you guys for holding your cool and not giving up she had a wonderful life and hope this don't stop you from having another child it will help mend the heart.🦒
You both were mean’t to be there by her side. You gave her soo.. much love, compassion and so many memories. Your daughter, had so much “loving care “
around her everyday! I know God was there with you all, along with his angels being there since she was born. Tori had some real special parents and grandparents.
God bless you all. 🙏🙏
It's so precious that you guys ( your parents included) can talk about her with such laughter and happiness. That is so special!
Wow!! Thank you so much for sharing this! For sharing sweet, Beautiful Tori! I’m so sorry for your loss! Tori is whole and Jesus has her!!🙏🏻😔♥️
I’m so sorry your family had to go through this. You have a Gorgeous Angel 👼🏻. Thank You both so much for sharing Tori & her story with us! I feel honored! Your daughter is so Beautiful💜
This was so beautiful and heartwarming. What a special little girl and the best parents ever! The picture in Mommy’s wedding dress just made tears run down my cheeks. 🦒🦒🦒🦒🦒🦒
Mine too!!
4 years later and I just watched this again. I have children in their 30’s and grandkids, and I am so thankful they are healthy. My heart goes out to these parents. ❤
Looks just like Dad. Mom, you're right , parenthood is NOT for wimps. My heart breaks for your loss. I am so happy you had her. The love, the joy, the hope. She was the best and worst you will experience. And you still are here. Your story, and the courage and compassion with which you share your journey, will touch and help support other families. It changes nothing for you. But it will be everything for another family. Thank you. God bless you and keep you. You will be together again. Because the love NEVER ends! NEVER.
Can't make much of a comment because you both said it all!!! What a beautiful little angel she was. Congrats on the twins. Am now going over to Hunters hope....I have no children but no baby needs to endure that and neither do the parents! God Bless!
So sorry that your family lost such a beautiful soul. You were smart to let everyone be able to hear about this from the very joy of her birth. Life was so good, then later, you knew little things were different. Wishing love and only smiles in your life. A broken heart never goes away, but you learn to live with it. You are always her Mom and Dad, she is your daughter, always, remember that joy of her.
We are so thankful you shared your daughters story.
This baby is such a sweetheart , so sorry for your loss I’m hoping with the birth of your twins that everything has turned out well I’ll be praying for yawl and sending much love to you and your family It’s such a precious thing to have family around to help out and your folks seem like wonderful people as well God bless
God bless you... Tori's got great parents and that's forever, love lives on! What a beauty!
This documentary touched my heart. Rest easy Tori.
What a sweet sweet lil baby girl.!! God bless this family.
Live every day like it's your last. God bless you.
Wow what a beautifully sad story.Thank you for sharing the joys as well as the sorrows.😢😊
God bless these parents and the mother's parents too. Family is everything. And its amazing the lobbying you are doing against the LD's and Krabbe's. I am sure Tori is so proud of you. My deepest condolences and congratulations on the twin boys!😀💖
I would gladly help crusade for all states to test for Krabbe....
Fly high, beautiful angel!
I can't imagine the HEARTBREAKING pain the both of you went through! I seen all the LOVE YOU and TORI'S GRANDPARENTS gave to her..I give you ALL so much RESPECT for fighting for other families and their babies to be able to have the opportunity to have mandatory screenings done, so maybe their child will have a chance to live a normal healthy fullfil full life!! TORI was a BEAUTIFUL A👼GEL here on Earth, who touched so many H💝arts. Now she is HOME with her HEAVENLY FATHER, FLY HIGH B👼BY TORI!! Much Love, Peace and Happiness!
It is with heartfelt wishes that God will sustain you! Many prayers and concern, and comfort are being given for you and your family. May the Lord continue to hold your tightly and give you his peace!
very touched by your story and precious daughter
Heartbreakingly beautiful💔💗 She is such a gorgeous baby. 💜Thank you for sharing Tori with us..and your family’s story. Thank you for your continued fight for Krabbe families. Tori has touched so many hearts and lives..your continued fight will help so many.
She was a beautiful little girl, I’m so sorry for your loss I wish you all the best with your mission and twins
What a gorgeous precious baby -good luck to you all especially wee Tori-God bless her xxxx
Thank You for sharing your beautiful little girl with us.. I am so sorry for your heartbreaking loss.. Leukodystrophy of any kind is such a horrible disease and I will never understand why they do not find it important to screen for it.
My niece was born a beautiful normal little girl, and it wasn't until she was old enough to walk but wasn't walking, that they decided something was wrong, she was misdiagnosed at first but after her first birthday she was diagnosed with Metachromatic Leukodystrophy (MLD) .. She has really regressed as she gets older however her mother is the most amazing woman I know and spends every minute enjoying the time she has with her.. she is now 6yrs old. and although she does not walk , talk, eat or many other things that I wish she could do.. one thing she still does is smile.
I thank you for your fight for these babies. and Im so so sorry you had such little time with your sweet girl..She is so beautiful.. I know she is shining her love down on her Mama and Daddy and grandparents.. As I truly believe the love never dies, it goes with you ..
.. Hugs and Prayer from across the miles.
What a heartbreaking story but you are so strong to share it and keep fighting. She was a beautiful and strong little girl just like her parents.
I read in the comments that you have been blessed with the birth of other children, that made my heart smile, you are amazing parents. ♡
Tori is a beautiful little girl. Prettiest little angel
It is beautiful to see families who love and seek to preserve life! ❤️ 🙏
I understand the feeling of peace, iv experienced it b4 when loved ones have passed away
and if they suffer b4 they pass its strange but u really feel okay and are thankful that they dont have to suffer anymore, you still feel pain and sorrow and most all other feelings of grief! The dad said it right when he said of coarse we still want her here but that our selfishness cuz she was suffering too much!
Im glad i watched this docu on Tori's Triumph because i learnt about a disease that i didnt even know about and how its treatable if diagnosed at birth but is terminal if not diagnosed!
God bless!!! She was a beautiful little girl.shes in in gods hands.bless your family always...
My husband gained my pregnancy weight as well!! Thank you for sharing your story!
Heartbreaking to watch. My heart goes out to these parents.
I am so sorry for your lost. You both are so strong. Your daughter was beautiful. Keep being strong.
Crying right now RIP to your beautiful baby girl. 🙏🏾😢 she’s not suffering anymore she’s right up with Jesus Christ
Thanks for this post. It's hugely inspirational.
I will go to Hunter’s Hope and fill out the letter. I am praying for the success of your “job” making sure Krabbe is no longer hurting families. You are wonderful parents. Tori was truly blessed by God, as were you. I need to check up on you and your boys.💕
tori is absolutely gorgeous.. look at those big eyes!!
So beautifully done, you guys rock!
Thank God you were blessed to be able to fulfill the bucket
List❤. I pray God will continue to comfort you both & your entire family during your time of grieving ❤ My sincerest condolences❤
Thank you for all your hard work in the legataters and I hope you know how much your story has touched me and so many others... I am so heart broken but I know your strong about your feelings and beliefs. I know that until the end of time you will fight. And I do believe that no child should have to go through this. And she was so beautiful. And strong. Hugs!! And CONGRATS ON YOUR TWINS!!! THATS AMAZING NEWS!!