Josvin Valdez-Ramirez

Hi guys! My name is Josvin! I am a 13 year old boy from New Jersey and I have Duchenne Muscular Dystrophy.

I was a healthy baby boy when I entered this big world! Everything was as normal as can be up until around age 4 when I started to lose the ability to walk by myself. After many doctor’s appointments, I was diagnosed with Duchenne Muscular Dystrophy on Valentine’s day in 2013 at Hackensack Medical University. Unfortunately, I can no longer walk, or move my arms and legs much. Things have been happening fast and I have been getting weaker which means more doctors visits. I was even in the hospital five times this year already for infections in my lungs.

I know you may or may not know me, but I am a really sweet, big hearted boy who prays to get better. I am hoping to have your help in fundraising for an adapted van so I can go to the doctors more easily. A wheelchair accessible van is very expensive and I wish it was something insurance covered to help me, but it is not.

I have been doing everything I can in my power to keep my muscles and my body strong, but it is not always easy. I wear my leg braces every day, my mom does my exercises with me every night, I have splints to sleep in, my little brother moves my arms and helps me stretch, I have therapy every day in school and I try to wear my back brace, but it is not very comfortable. I used to love to walk, but now I am no longer able to. I can still move my hands on my arm rests to wave hi to you so dont worry!! I now use a custom power wheelchair to get around, but I don’t mind because I love to go fast while driving it! And everyone says I am the best parallel parker around! Even though I have this amazing wheelchair, I am only able to use it at school and at home because the school bus has a wheelchair lift.

I have a lot of doctors appointments that I need to go to like the neurologist, orthopedic surgeon, physiatrist, pediatrician, pulmonologist, cardiologist, and orthotist- so it is really important for me to get there safely when my mom brings me. Unfortunately, I cannot take my custom power wheelchair with me to any appointments or my other family members homes because our family car cannot lift the wheelchair in. My mom usually picks me up by herself and puts me into our car. When we get to the appointments, I have to sit in a regular wheelchair that does not help me sit up straight. My muscles dont keep me upright anymore so I need physical supports on my sides to hold me in the middle, but right now our car is not able to bring my custom chair with me. Sometimes appointments are very long so I sit crooked and feel like I am going to fall a lot. My mom tries to help me the best she can.

I am so happy my parents found Help Hope Live because it will allow me to hopefully one day take my chair anywhere! I would love to take my chair to the doctors more so maybe I get sick a little less. I am also still a kid so I would love to take my chair to the park, or my cousins, or attend other events for kids like me!!

I promise to keep working hard to be the strongest boy I can be!

Thank you all for your support- I love hugs, and if I could give you one through this screen I would. Two thumbs way up!

Josvin

**Family and friends of Josvin Valdez are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!