Our Journey with Myotonic Dystrophy

Cure For Kayla

Category:

Nonprofits & Activism

Tags:

• congenital
• myotonic
• dystrophy
• OneTrueMedia

[MrWainsco]

Please feel blessed. My daughter with Myotonic dystrophy did not make it past 1month old. I wish I could have what you have.

[BabyKaylasMom]

@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.

[MissTiggyWiggle]

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.

[BabyKaylasMom]

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.

[gabrion04]

Thanks alot , God belss both of you (The mother and Father) you are caring your baby like anything . !!!!!!!!!!!!!!1

[BabyKaylasMom]

Thank you for your comment. I love my daughter more than anything in the world and would do anything to help her.

[GoldenErnieEddy]

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!

[DudleBug12]

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!

[UnionKidz]

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.

[woowho2000]

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.

[everandaday000]

This brought me to tears. Kayla is so beautiful. =)

[SRV32566]

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

[Lynnssie4peace]

@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.