And, everyone that has donated!
Hi my name is JJ and I am 10 years old. I was diagnosed with Duchenne Muscular Dystrophy on April 1st 2019. I was never athletic and not very good at sports, but that's okay because what I really love is to draw and paint. I'm also really good at school even thought I don't like it very much. I'm obsessed with Bendy and the Ink Machine, I love to dance, and sing to those songs. I also have a little brother who I love to play with and also try to protect. I like to tell jokes to my family. At night I enjoy a family movie with my mommy until one of us falls asleep .
Hi my name is Andrew and I am 4 years old. I am my mommy's wild child and I am so full of life. I love to run, play, jump, and dance to Bendy songs with my brother. I also think I am Spider-Man and I love all the Avengers. I like the outdoors, but I don't get out much because just like my brother I was also diagnosed with DMD.
1 in 3,500 male births will be diagnosed with Muscular Dystrophy. Duchenne being the most common in boys. Duchenne is a progressive genetic disorder and with no known cure it is 100% fatal. We all have 79 exons in a dystrophin gene, with one single fault causes Duchenne. Boys with Duchenne don't produce dystrophin which is a protein our b
1 in 3,500 male births will be diagnosed with Muscular Dystrophy. Duchenne being the most common in boys. Duchenne is a progressive genetic disorder and with no known cure it is 100% fatal. We all have 79 exons in a dystrophin gene, with one single fault causes Duchenne. Boys with Duchenne don't produce dystrophin which is a protein our body's need to function properly. For example JJ and Andrew are exon 4 deletion also know as stop codon or nonsense mutation. JJ has large calves, can't walk stairs and would fall frequently which are all common signs of Duchenne.
Since Duchenne is a progressive disease JJ has been struggling a lot after his diagnosis. He would fall again and again. He could no longer walk stairs. He had very little energy and hardly any upper body strength. So we decided to take him to get a stem cell treatment/infusion on August 7th 2020. After that treatment we seen a change. J
Since Duchenne is a progressive disease JJ has been struggling a lot after his diagnosis. He would fall again and again. He could no longer walk stairs. He had very little energy and hardly any upper body strength. So we decided to take him to get a stem cell treatment/infusion on August 7th 2020. After that treatment we seen a change. JJ could now walk all day without falling or getting fatigued. His attitude changed, he was happier, and it showed. However stem cells do wear off and after 2-3 months he was having trouble again. We plan on taking him to get these treatments for as long as necessary until there is a cure for our boys.
While Andrew isn't actively showing symptoms like JJ. We would like to keep him up to speed with the same treatment to avoid him struggling in the future like his big brother.
Cure Rare Disease is one of the newer organizations in the Duchenne community, and we are happy to announce we are working our way to be a part of that community. They are currently working on a customized therapeutic also known as Gene Therapy and are close to their goal of treating their first patient. Please click on the link below to help support our organization.
Another way of donating is by using the Cash App: $TogetherFightingDMD, Zelle: 6234665151 To Monica Cabrera. Or if you want to donate an item to raffle please e-mail us at monicabrera615@yahoo.com
Your contribution will enable us to keep up with all medical expenses and treatment. We are very grateful for your generosity.
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