@MrWainsco I am so sorry to hear about your daughter. I do feel blessed every day and do not take Kayla for granted for a minute. I know many families now that have lost children to congenital myotonic dystrophy. I manage the Myotonic Dystrophy Foundation now so I hope you will join and help us to move toward treatments for DM. myotonic dot org God Bless you and your family.
BabyKaylasMom - God put you and your husband on this earth as angels...angels in the making while he was getting ready to bless you with this beautiful little girl! As an occupational therapist with experience in early intervention, I can tell you from the bottom of my heart that there is nothing in this world that is better for Kayla than parents just like you!! Keep working, keep fighting, and keep believing - you appear to be quite the miracle mom already!
very inspirational... so much so that I am going to start working on a video of my daughter. Three of our four children were born with Myontonic Dystrophy. It wasn't until our fourth child was born that we found out about Myotonic Dystrophy. Your daughter even looks similar to ours and watching your video brings back many memories. She is now in 5th grade. We feel the same way about our daughter as you mentioned. We wouldn't change a thing about any of our children! Thanks for your inspiration.
I'm sixteen years old and I have myotonic dystrophy, it doesn't bother me everyday, but I have days I can't really move either. I just learned to ignore it, I personally don't care that I have myotonia but it pisses me off sometimes
I cried watching the beautiful progress of your daughter. I have Myotonic Dystrophy (only 600-800 repeats). I got checked because my niece was born with over 1000 repeats. She's just over 2 and is making great progress. God bless all 3 of you/
my family suffers from this illness and was glad to find more about this as the doctors here don't know much,,i do suffer slightly in the hands and somtimes face muscles but my cousin son.my father and uncle suffer badly,,i hope you find what you are looking for in a cure of some sort in the near future..you're daughter looks beautifull and i hope she smiles for you and the rest of sufferers soon..
From one myotonic family to another, good luck and God bless you and little Kayla. We have lived with this dreadful disease for 23 years and lost our youngest to it when he was 2 months old in 89, but he was extremely severe. We were given these beautiful gifts from God for a reason. I need to tell myself that from time to time. Good luck with everything.
i have watched a few of kayla's video & she is truly a gift from god . she helped me realize that anything is possible . i am a high school student & i have to do a project on myotonic dystrophy & i was wondering if you could tell me some of the effects that come from this disease . i would rather hear it from a sourse than someone who doesnt really know . thank you very much for the help .
Awesome parents. God must have brought this purpose to your door knowing you would carry through with the goals that needed to educate and change the world. What an incredible song! Did you write it? I've downloaded it to share. I'm praying for you and have asked my friends to do the same. I have MD #2.
Thank you so much for your sweet comment. I do feel like I was born to be able to help Kayla. I would do anything for my sweet angel. I didn't write the song but I fell in love with it. It's so fitting for Kayla.
@BabyKaylasMom - God bless you all. The internet has been a place of education and a reality that we are all one. Many colors and ethnicity and yet we all share the same thread of this humanity. Sometimes it brings our toils and yet - I will hold your hand for we are all connected and in it together. My prayers are with you and surely she is growing in leaps and bounds and to God - be the glory.
@MissTiggyWiggle I am truly touched at the compassion these parents have for their child but I hope you don't mean to imply that God gave or let their child have a debilitating congenital disease so they could inform the world about it.
My Mother suffered from Myotonic Dystrophy, as does my sister. i have yet to be tested, but watching stories like your family's and seeing the amount of support behind finding a cure gives me faith in the fact that the light of human life can shine right through this illness. God Bless you and your family richly :)
Thank you for sharing. My husband is diagnosed with MD. It's very hard to see the impact of MD Deep respect for you. God bless you!
GoldenErnieEddy 1 month ago
Please feel blessed. My daughter with Myotonic dystrophy did not make it past 1month old. I wish I could have what you have.
MrWainsco 2 months ago
@MrWainsco I am so sorry to hear about your daughter. I do feel blessed every day and do not take Kayla for granted for a minute. I know many families now that have lost children to congenital myotonic dystrophy. I manage the Myotonic Dystrophy Foundation now so I hope you will join and help us to move toward treatments for DM. myotonic dot org God Bless you and your family.
BabyKaylasMom 2 months ago
BabyKaylasMom - God put you and your husband on this earth as angels...angels in the making while he was getting ready to bless you with this beautiful little girl! As an occupational therapist with experience in early intervention, I can tell you from the bottom of my heart that there is nothing in this world that is better for Kayla than parents just like you!! Keep working, keep fighting, and keep believing - you appear to be quite the miracle mom already!
DudleBug12 7 months ago
Comment removed
DudleBug12 7 months ago
Nice video. I've got a report on it due in two days. So hard to find academic journals on exercise programs. Good luck to Kayla and your fam.
UnionKidz 8 months ago
very inspirational... so much so that I am going to start working on a video of my daughter. Three of our four children were born with Myontonic Dystrophy. It wasn't until our fourth child was born that we found out about Myotonic Dystrophy. Your daughter even looks similar to ours and watching your video brings back many memories. She is now in 5th grade. We feel the same way about our daughter as you mentioned. We wouldn't change a thing about any of our children! Thanks for your inspiration.
woowho2000 8 months ago
This brought me to tears. Kayla is so beautiful. =)
everandaday000 10 months ago
I'm sixteen years old and I have myotonic dystrophy, it doesn't bother me everyday, but I have days I can't really move either. I just learned to ignore it, I personally don't care that I have myotonia but it pisses me off sometimes
SRV32566 10 months ago
May God bless you both and remember that God has you all in his arms.
Lynnssie4peace 10 months ago
I cried watching the beautiful progress of your daughter. I have Myotonic Dystrophy (only 600-800 repeats). I got checked because my niece was born with over 1000 repeats. She's just over 2 and is making great progress. God bless all 3 of you/
bman7776 11 months ago
You are a BEAUTIFUL family! God Bless you!!!
tronchaser76 1 year ago
I really do respect parents who take a good care of their kids who have special needs. I wish all the best for Kayla and I pray to God for her.
LuaiGhazali 1 year ago
Awesome..I have 3 kids with MMD...
b757ninja 1 year ago
She is so beautiful! As a mother of a child with Myotonic Dystrophy, I have been through it all. You do a wonderful job!
cocktailisha 1 year ago
my family suffers from this illness and was glad to find more about this as the doctors here don't know much,,i do suffer slightly in the hands and somtimes face muscles but my cousin son.my father and uncle suffer badly,,i hope you find what you are looking for in a cure of some sort in the near future..you're daughter looks beautifull and i hope she smiles for you and the rest of sufferers soon..
all the best for you and you're family. simon
MrSimoncocks 1 year ago
Just put her on Cannabis extract. Look up 'Rick Simpson'.
germanicelt 1 year ago
ugh that was so beautiful. Thank you for raising myotonic dystrophy awareness. That was a very emotional video.
jwardmagic07 2 years ago
From one myotonic family to another, good luck and God bless you and little Kayla. We have lived with this dreadful disease for 23 years and lost our youngest to it when he was 2 months old in 89, but he was extremely severe. We were given these beautiful gifts from God for a reason. I need to tell myself that from time to time. Good luck with everything.
MrSinAfterSin 2 years ago
i have watched a few of kayla's video & she is truly a gift from god . she helped me realize that anything is possible . i am a high school student & i have to do a project on myotonic dystrophy & i was wondering if you could tell me some of the effects that come from this disease . i would rather hear it from a sourse than someone who doesnt really know . thank you very much for the help .
missalt09 2 years ago
Awesome parents. God must have brought this purpose to your door knowing you would carry through with the goals that needed to educate and change the world. What an incredible song! Did you write it? I've downloaded it to share. I'm praying for you and have asked my friends to do the same. I have MD #2.
MissTiggyWiggle 2 years ago 5
Thank you so much for your sweet comment. I do feel like I was born to be able to help Kayla. I would do anything for my sweet angel. I didn't write the song but I fell in love with it. It's so fitting for Kayla.
BabyKaylasMom 2 years ago
@BabyKaylasMom - God bless you all. The internet has been a place of education and a reality that we are all one. Many colors and ethnicity and yet we all share the same thread of this humanity. Sometimes it brings our toils and yet - I will hold your hand for we are all connected and in it together. My prayers are with you and surely she is growing in leaps and bounds and to God - be the glory.
Lynnssie4peace 10 months ago
@MissTiggyWiggle I am truly touched at the compassion these parents have for their child but I hope you don't mean to imply that God gave or let their child have a debilitating congenital disease so they could inform the world about it.
rlmcviii 1 year ago
Thanks alot , God belss both of you (The mother and Father) you are caring your baby like anything . !!!!!!!!!!!!!!1
gabrion04 2 years ago 2
Thank you for your comment. I love my daughter more than anything in the world and would do anything to help her.
BabyKaylasMom 2 years ago
@BabyKaylasMom
You are wonderful parents and you
have a beautiul child.
It is wonderful she is walking
God Bless You
The391956 1 year ago
My Mother suffered from Myotonic Dystrophy, as does my sister. i have yet to be tested, but watching stories like your family's and seeing the amount of support behind finding a cure gives me faith in the fact that the light of human life can shine right through this illness. God Bless you and your family richly :)
StevewiththePbass 2 years ago
thanks for posting this video, it helped better understand myotonic dystrophy foe my med. exams. my prayers for your loving family and Kayla
ashrafimsharaf 2 years ago
Thanks for posting your video and creating a greater awareness of Myotonic dystrophy. i have been raising children with this disease for 20 years
crowlandboy 2 years ago 2