Category: Duchenne Stories

El es Santiago Blussand, tiene 14 años y vive en San Francisco, provincia de Córdoba, Argentina; con su mamá Graciela, papá Carlos y sus hermanas Carla y Camila. Como Santi tiene además de la distrofia muscular de Duchenne, epilepsia y una hemiparecia derecha que le afecto el habla, yo, su mamá les voy a contar como es él. Es una personita muy dulce, siempre con una sonrisa pesar de tener malos días. Va a una escuela especial llamada APADIM en donde Santi encontró su lugar en el mundo y la pasa muy bien. Su seño Fany se encarga de hacer que se divierta mucho junto a sus compañeros. Es el mimado de la escuela, sus compañeros se encargan de integrarlo a cada juego que realizan y hasta corren carreritas con las sillas de ruedas. Disfruta mucho estar al aire libre y ama los caballos; Tiene una amiga inseparable, su perra Luli, que es como su ángel guardián. Le gusta mucho dar vueltas en auto, escuchar música, mirar tele y comer asados en familia. Su kinesiólogo viene 3 veces por semana a casa a realizarle sus ejercicios que no le gustan mucho. Cuando sus hermanas están en casa con sus amigas él siempre esta en el medio, no se pierde nada, es muy sociable y muy querible. En síntesis, así es Santi, una personita que nos enseño a tener fuerzas en los momentos más difíciles. Nuestro deseo es que algún día se encuentre la cura de esta enfermedad. Tratamos de que sea feliz y lo disfrutamos todo lo que podemos.

This is Santiago Blussand, he is 14 years old and lives in San Francisco, Córdoba, Argentina, with his mom Graciela, his dad Carlos and his sisters Carla and Camila. As Santi has Duchenne muscular dystrophy, epilepsy and a right hemiparesis which caused speech impairment, I, his mother, will tell you how he is like. Santi is a very sweet little person, and despite having bad days, he has always a smile on his face. Santi goes to a special school called APADIM where he feels comfortable and he is having a great time. His teacher, Fany, makes sure that he has much fun with the other kids. He is the sweetheart of the school, he is very involved in all games and they even do races with wheelchairs. Santi enjoys being outside and he loves horses. Luli, his dog, is his inseparable friend, he is like a guardian angel. Santi loves riding around in the car, listening to music, watching tv and barbecuing with the family. His physiotherapist comes three times a week home to do exercises which he does not like very much. He is always around when his sisters and friends are at home. Santi is very social and loved. He taught us to be strong in even the most difficult moments. Our wish is that one day this disease will be cured. We want him to be happy and we enjoy the most we can.

I am 9 years old, going in to the 4th grader. I love the out doors, and everything about it. I am a fisherman, hunter, frog gigger and love to catch animals and make them habitats. I also love to ride my 4 wheeler. My best memory would have be a tie between my recent Make A Wish trip to South Africa and shooting my first turkey with my dad and Michael Waddell. My funniest memory is the Lemurs bouncing all over me at Cango Wildlife Park in South Africa. If I could invite any three people dead or alive to dinner it would be Albert Einstein, Lewis and Clark and Abraham Lincoln. My day is a success when I have played all day until I am exhausted at night. If I could change something in the world, I would make it so that everyone was healthy and no one could have any illnesses.

Ravi loves cars more than anything in the world. He says, he loves to talk, think and even dream about cars. His favorite games are car racing which he plays on the computer especially racing games such as Es racing, air force and army tank. His ambition is to work in a car manufacturing factory. Jaguar, Ferrari and Lamborghini are his shortlisted firms in which he would like to work when he grows big. His hobbies are learning about vehicles and drawing cars, trucks and bullet trains. He has learnt almost everything related to cars and always keeps himself updated about cars, bikes and bullet train. Ravi’s world of cars is very fast and vast. He keeps reading and watching so much about cars that very often he embarks on something fascinating about cars. More interesting story about Ravi is that, he always carries a toy car with him wherever he goes. It is not surprising to find a car if you dig into his pocket. Apart from cars, Ravi keeps himself busy with very challenging television channels are discovery, nat geo and food factory. He said, his world of interests does not end with cars and TV programs, but here is so much more. On interrogation, we found he has a flare to read and taste delicacies from various parts of the world. Nevertheless, his favorite foods are mushroom biriyani, and the world famous Indian mangoes. Ravi comments that no child can end the list without chocolates and so does Ravi.

Ravi loves being with his family members too. His family is a small sweet family he says, accompanied by his parents and a brother. He loves going out with his family and he makes sure he spends the weekends with his parents. Sometimes, he likes to watch movies with his family too. His favorite subjects are science (to read and learn all about machines and how they work) and English. Ravi’s dream is to turn into an automobile engineer and design the best of cars which are most unique with never thought before techniques. It was very interesting to hear that he used to go to watch children swim though he cannot. With lot of positive attitudes and thrill, he said, though I don’t swim I love to watch other kids swim and splash water with butterfly strokes soaring high up in the air. Ravi has so many stories to share. He is sportive at heart and loves to share a lot of things. He shares every event that he came across in school or at home. Sometimes, he entertains us with little anecdotes and stories from far and wide. We love being with Ravi and he says he loves being with us too.

Somos una familia de la ciudad de Trelew, Chubut, donde nuestro pueblo recibió con gran alegría que el papa, sea Argentino. Con la llegada del papa argentino, también llega a nuestra familia Maria Emilia, una hermosa bebé, mi hermana!- Pero toda ésta alegría se ve opacada en pocos días con una noticia que cambiara nuestras vidas, una neuróloga de la ciudad de Puerto Madryn ( que a propósito ciudad muy hermosa, según mamá el lugar más lindo del mundo!) diagnostica que tengo una enfermedad llamada Distrofia Muscular de Duchenne. Todo pasa muy rápido, consultas, análisis, viajes a Buenos Aires donde confirman la enfermedad.

Tengo seis años y una familia llena de amor, todos me disfrutan y yo quiero a todos, a mi mamá le dicen todos que tanto amor me va ayudar!!! Tanto amor hay en mi vida, que todos se preguntan por qué me tuvo que tocar a mi esta enfermedad, la verdad que no lo sé, pero lo que si sabemos con mi mamá, mi papá y toda mi familia, que la vamos a pelear mucho para salir adelante, como dice un libro, no sé si le vamos a ganar pero por lo menos al Sr. Duchenne lo vamos a aburrir! Los súper héroes son mis favoritos, todos los medios días al llegar de la escuela me desespero por mirar Dragon ball z, me encantaría tener la súper fuerza de Goku, y sueño con eso. Mis días en la semana pasan muy rápido, con tantas actividades (psicopedagoga, psicomotriz, kinesiólogo, natación y psicologo), a veces no me queda lugar para disfrutar del día libre, pero si lo aprovecho los fin de semana. Amo ir al club con papá , dormir con mi abuela amuchadito, como me dice ella refiriéndose que abrazados y tomar la leche que me hace mi abuelo!!!

Nuevamente le rezó al papa Francisco, como sabemos que vino a éste mundo a ayudarnos y a darnos mucha fe, y que tiene posibilidades, queríamos pedirle que ayude al Dr. Dubroski y a los científicos del mundo que están luchando para encontrar la cura a esta enfermedad, para que tantos chicos de este mundo disfruten de la vida y que me ayude a cumplir un sueño de mi mamá, que no tenga que necesitar la tan temida silla de ruedas.

Un saludo enorme,
Santino

We are a family from Trelew, Chubut, where we received the pope, being Argentinian, with open arms. With the arrival of Argentine pope also Maria Emilia came in our family, a beautiful baby, my sister! But all this joy was overshadowed in a few days with the news that would change our lives, a neurologist from the city Puerto Madryn (which by the way is a very beautiful city, according to my mom the most beautiful place on earth!) diagnosed that I have Duchenne muscular dystrophy. Everything happened very fast, consults, analysis, trips to Buenos Aires where they confirmed the disease.

I am six years old and I have a family full of love, everybody is haoppy having me around and I love them all, they tell my mom that so much love will help me!!! With so much love in my life, everyone is wondering why I have this disease. I really do not know, but what we do know is that with my mom, dad and all my family, we will fight hard to get ahead, like a book says, I do not know if we’re going to win but at least Mr. Duchenne will get bored of us! Superheroes are my favorite, every afternoon after getting home from school I can´t wait to watch Dragon Ball Z, I would love to have the super power of Goku, and I dream about it. The weekdays pass by very quickly, with so many activities (educational psychologist, psychomotor, physiotherapist, swimming and psychologist), sometimes there is no time left to enjoy the day, but I do enjoy in the weekend. I love going to the club with my dad, to sleep ´amuchadito´ with my grandmother, as she tells me, referring to sleep embraced and drinking the milk that my grandfather prepares!!!

Again I pray to the pope Francisco, as we know he came to this world to help us and to give us great faith, we wanted to ask him to help Dr. Dubroski and all the scientists in the world who are struggling to find a cure for this disease, that many boys in this world can enjoy life and that he helps me to fulfill my mom´s dream: that I do not need the so feared wheelchair.

Many greetings,
Santino

Me llamo Diego Axel A rellano Salomón. Tengo 12 años y estudio en la secundaria y tengo distrofia muscular de Duchenne. Me gusta la música de bigbang, G dragón, y Pitillo. Práctico el deporte Boccia en el teleton, entreno 1 vez cada 2 semanas.

My name is Luke Bowman. I live in Littleton Colorado with my mom and dad. I will be in 1st grade this fall at Ralph Moody Elementary School. I love playing with other kids and my cousins more than anything!  If I could change something in the world, I would have a sister. I am super talented because I am good at swimming, singing, dancing and playing video games. I also love to ski, ride horses, build Legos and go camping and fishing. My best memory is going to Camp Promise for the first time- especially doing the climbing wall and zip line. My funniest memory is pinching Minnie Mouse’s nose when I met her.
My day is a success when I had fun playing with my friends. If I could invite any three people dead or alive to dinner, I would invite Luke Skywalker, Yoda and Mario.

I’m Jared Sweet, and I’m 13 years old (14 on August 2nd). I have a mom, dad, 2 brothers, 2 dogs, and a lizard. My favorite thingsto do are read and play video games. If I could change one thing in the world it would be the amount of food allowed in a stomach. My best memory will probably be when I’m 20 or 30. My funniest memory is most of the stuff my family says. If I could invite any three people to dinner they would be Russell Wilson- the Seattle Seahawks quarterback, Pele- the Brazil soccer legend, and Steve Jobs-Co-founder of Apple. My day is a success when I get 8 hours of sleep.

This is my son Matthew Denger and his close friend Beth. I chose this photo because it accurately captures my son the way he lived. Matthew was attending university, studying Political Science and always with friends. My son passed away in February 2013, yet his spirit lives in those who knew him well.
Duchenne muscular dystrophy is a cruel disorder robbing a person of physical ability and independence.  My son stopped walking at age 8, needed surgeries by age 13 to correct the deformities in his feet and back stemming from muscle weakness and slept with mechanical breathing support starting at age 16. Like many of his affected peers, Matthew didn’t allow Duchenne muscular dystrophy to end his goals and dreams. In spite of his physical condition, he attended college full time and was an Orientation Leader and part of the team that welcomed and helped new students at the university. Matthew volunteered in the local office of our US Senator, sang in a community chorus and enjoyed being with his friends.

My family misses Matthew dearly and always think of him with fondness. We sometimes wonder what he would have been like if he didn’t have muscular dystrophy and realize he probably wouldn’t have been different than he was. He lived a life of no regrets and always looked to the future.

On World Duchenne muscular dystrophy Awareness Day I share a bit of his story to encourage those who live with this disorder to set high goals and to pursue their dreams. I also write hoping others will learn about the condition and consider getting involved by helping to fund research to improve survival and the quality of life for those living with Duchenne muscular dystrophy.

Today and every day I remember Matthew. On this day I share his story to help others know him and help those like him.

Peace

Brian Denger

Seth is a 9 year old boy with Duchenne Muscular Dystrophy. He is friendly, loves swimming and can build amazing projects with Legos. Like many boys, he also loves to play ball, any type of ball. Baseball is his favorite and as long as he can walk and play, he will do just that. While he is not as fast running bases and tires easily, he is gives it his best and loves every minute. He asked recently about not being able to walk and inquired what would he do if he could not throw a ball. Fortunately, thanks to the amazing work of PPMD and their vision, I witnessed a robotics demonstration and learned about many ways people are helping kids and adults with Duchenne do things they no longer have the ability to do. After explaining about these innovations, he was excited that his ball playing did not have to end. It would just need to be modified with robotic type devices. He would love a cure for DMD and prays for it nightly for himself and all the people affected by it. He also prayed for a dog for several years. Now he has his dog, Edison, who is his service animal and “brother.” He is pictured here with Edison. While he loses strength each day, he continues to fight DMD and never gives up. His parents are inspired daily by him and his smiles bring joy to their home.

Tell us about yourself.
My favorite color is green and I love to play baseball.

If you could change something in the world what would you change?
No School.

What is your best memory?
The trip to Give Kids the World.
(This was our Make a Wish Trip to Disneyworld. He said it was like paradise.)

What is your funniest memory?
We have tickle fights together as a family.

If you could invite any three people dead or alive to dinner who would that be?
Levi, Logan, and Talan.
(Funny- these are his best friends he has kept since daycare.)

My day is a success when… I have fun.

Hej
Jag heter Zebastian, är snart 12 år gammal. Jag har dmd, adhd och dyslexi. Jag bor i Sverige med min mamma, bonuspappa och 7 syskon. Det bästa jag vet är att spela Playstation 3, men sparar ihop till en Playstation 4. Förra året fick jag en knapp på magen. Genom den får jag min mat och mediciner. Jag har nämligen väldigt svårt att svälja. I skolan går jag i en liten grupp. Ibland är jag själv där men vissa lektioner har jag med min stora klass. Jag älskar idrott och matte. Jag har ett stort gäng med personliga assistenter. De hjälper mej dygnet runt. De är mina bästa vänner. Med dem går jag gärna på bio eller till badhuset. Film är jättekul och en av mina drömmar är att se hur man spelar in actionfilmer i USA. På helgerna springer jag gärna och leker med mina syskon. Fotboll är rätt kul eller att leka i sandlådan. Nyligen fick jag en ny elrullstol som jag brukar köra när jag blir väldigt trött i benen. Min allra största dröm är att få åka med hela familjen till Florida, till Disneyland och sen få åka på deras kryssningsbåt. Men först ska jag spara ihop till en ny Playstation 4 så jag kan spela ännu roligare spel.

My name is Zebastian and I am almost 12 years old. I have DMD (muscular dystrophy), ADHD (attention deficit hyperactivity disorder) and dyslexia. I live in Sweden with my mother, stepfather and 7 brothers and sisters. The best thing I like to do is to play with Playstation 3; but I am also saving towards a Playstation 4. Last year I got a button placed in my stomach. I get all of my food and medicine through it because I have a hard time to swallow. I go in a little group in school and sometimes I receive individual instruction. I also go in a larger class for some of my studies. I like math and physical education. I have a large group of personal care providers that help me 24 hours a day with my needs. They are my best friends. They go with me to movies and the swimming pool. I love movies and one of my dreams is to see how action films are made in the USA. On weekends I run around and play with my brothers and sisters. Soccer (football) is fun or we enjoy playing in the sandbox. Recently I got a new electrical wheelchair which I use when my legs get really tired. My biggest dream is to travel to Florida with my entire family and to go to Disneyland and to take the boat cruise there. But first I will save to buy a Playstation 4 so I can play games that are more fun.