Videos of children, dogs with Myotubular Myopathy

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Joanna Browning writes about her son, Jacob:

“Jacob is a sweet 2 -1/2 year old with a love and determination for life! He loves spending time with his family, especially big brother Sam, and enjoys drawing, working on his flashcards, and watching Sound of Music. He steals the hearts of everyone he meets with his sweet spirit and smiling eyes. For a child that faces challenges daily, he has no limits in his ability to love and inspire all that have the benefit of knowing him. This little boy will do BIG things to make this world a better place.”

 

 

Lori Seedes writes about her son Beau:

“We were able to take him in the pool and allow him to float and feel weightless. He loved it and wouldn't get out of the water. Beau turns 2 on May 27th and this was part of his birthday celebration.”

 

 

Sara Heyden writes about her son, Hudson:

Hudson is 3 and he goes by “Huds.” He loves playing with cars, dinosaurs, building houses and towers, going outside and learning new things. He loves music, especially Justin Timberlake. His passion is the farm and his favorite animal is an octopus. It is also his favorite thing to draw. He brings so much light and inspiration to everyone's life and has the biggest heart and sense of humor. With everything he’s gone through, he still smiles and finds laughter and happiness in everything. Nothing holds him back.

 

 

Angelica Townshend writes about her son, Jamie:

"Jamie is 2 now. We live in Florida, and Jamie loves Mickey Mouse, swinging on his platform, swinging on the tree outside, and getting attention! He loves tickles and kisses and peekaboo; we love him dearly and so want for him to be well again. It's been such a tough year with 5 admissions to the hospital and too many near losses."

 

 

Katharine Atkins writes about her son, Liam:

“Liam is a year-and-a-half old he like to listen to music. He lives is Kansas City, Missouri.”

 

 

Lyndsay Jones talks about her two-year-old son, Raxton, who lives in Texas

 

 

Videos of dogs after receiving gene-replacement therapy

Puppies, before and after treatment

Video provided by U.W. Medicine shows five-month-old puppies that were born with a deadly form of muscular dystrophy. The puppy who is very active was given a single dose of gene-replacement therapy.

 

 

Video from U.W. Medicine

Video from U.W. Medicine showing the dramatic increase in strength after dogs have undergone gene replacement therapy. Dr. Casey Childers describes the changes.

 

 

Website for families of children with Myotubular Myopathy

>>Joshua Frase Foundation:  http://www.joshuafrase.org/

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