My most recent moment of hope was when Lola said "mama!" I have been waiting to hear that word from her for 5 yrs! She has always looked in my direction when asked where mama is, but to hear her say it was so magical.
Ft Worth, TX
I have a #MomentofHope when talking with Gabe and he looks me in the eye with understanding then answers me using his AAC device. His intent is undeniable. His understanding is so obvious. These moments of clarity give me all the hope I need to make it through another day of advocating and making sure his voice is heard!
Cuando puedo abrazar a quienes amo, ahí el tiempo se detiene y sabemos que todo estará bien
Juan Camilo Castellón Sierra
Cada avance, cada logro alcanzado con perseverancia, lucha y valentía son esos momentos que me dan fuerzas a pesar de las otras tantas dificultades. Cómo olvidar el día que Nico dió sus primeros pasos, el día que saltó o trepó en alguna parte, el día que se lanzó a nadar, el que tomó mi mano para mostrarme que era lo que quería. Todo eso en mayúscula es ESPERANZA, que al final del día, se traduce en la confianza de creer que todo es posible, porque con la energía que te entrega ese abrazo estrangulador y esa sonrisa indescriptible, no es posible detenerse. Te muestran que el camino continúa, que aún queda recorrido con la esperanza de que la ciencia haga su presentación final y ese sueño que todos soñamos, sea realidad.
Reímos en grande, soñamos en grande y grande será también nuestro destino.
Each advance, each achievement achieved with perseverance, struggle and courage are those moments that give me strength despite the many other difficulties. How can I forget the day Nico took his first steps, the day he jumped or climbed somewhere, the day he started swimming, the day he took my hand to show me what he wanted. All of that in capital letters is HOPE, which at the end of the day, translates into the confidence to believe that anything is possible, because with the energy that that strangling hug and that indescribable smile gives you, it is not possible to stop. They show you that the road continues, that there is still a long way to go with the hope that science will make its final presentation and that the dream, that we all dream of, will come true.
We laugh big, we dream big and big will be our destiny too.
Temuco, La Araucania
Raising a child with AS evokes never-ending moments of hope. One that comes to the forefront is Maddie's first independent steps! Walking was one of the many milestones we were told were improbable for Maddie to achieve following her diagnosis. The mere experience of our whole family witnessing this surreal milestone together is irreplaceable. While the walking was wonderful, the symbolism that the improbable can be probable, the impossible is achievable has provided a different outlook as we go through life with AS. We wholeheartedly feel this way about treatment, too, and hope that treatment will be a #momentofhope in the near future.
Mission Hills, KS
Matthew, 10 yrs old, UPD, have had a lot of milestones that have been a string of hope for the family ... from walking at 3, fully potty trained at 5, fully utilizing his AAC at 5, verbalizing words every day, but what is most hopeful for us is how he has been so expressive and communicative of the things he likes to do and what motivates him. As recent as Christmas, we cruised to Mexico and aboard the ship, the thing he wanted to participate the most was to do karaoke when he can. On our 1st night, we attempted to do karaoke, and to our amazement, he sang duet with me, leading the crowd to participate and he sang like there was no Angelman Syndrome stopping him to perform.
Deseamos que llegue la cura para darle una mejor calidad de vida, y nuestro momento de esperanza fue cuando Mirko empezó a expresar todo lo que siente y quiere
Mar Del Plata, Buenos Aires
when I can communicate through my hugs, gestures and smile
Jeronimo Velasquez Saldarriaga
Hemos tenido muchos momentos de esperanza, desde que supimos el diagnóstico de Isabel nos hemos enfocado en que cada pequeño logro de ella sea una esperanza para toda la familia. Uno de los momentos con más esperanza fue cuando hace un año Isabel dio sus primeros pasos… #DreamBig
Santiago, Las Condes
My moment of Hope was when my daughter started doing sit-to-stands alone. The pure determination on her face said it all. She has been working hard to accomplish this goal, and she NAILED it. I am unbelievably proud of her; she is so proud of herself!
Fall River, WI
My moment of hope for Ashley was when she walked into her senior year of school, a district where she's been her entire education, and the typical kids walked next to her, engaging in conversation with her. They knew she wouldn't speak back, but you could see the joy both their faces and Ashley's as they exchanged good morning pleasantries. Ashley has a life of her own at school, her own relationships, her own preferences, and in that small moment, she was just another kid excited about her first day of her senior year.
Marble Falls, TX
Over the weekend Emily started doing a downward dog yoga pose. This gives me hope that she can learn to stand up from a flat surface herself soon. Go Emily! We are so proud of you.
My moment of hope was when my son was watching a YouTube video and started laughing at the appropriate time. HE UNDERSTANDS HUMOR! – His laugh alone brightens anyone’s day and this moment brought me so much hope and fueled me to fight for a cure so one day, he can tell me what he thought was so funny.
Mateo tiene 11 años y es el súper héroe de la familia, con su lucha incansable ha logrado vencer muchos obstáculos, a sus 4 años camino solo y ese fue su primer súper poder, devolverle la fe a toda su familia, a sus 5 años comenzó a comer y nos enseñó que con ganas todo es posible, a sus 7 años comenzó a ir al baño solo y nos enseñó el poder de hablar con gestos y expresiones corporales y hoy a sus 11 años después de años de mucha dedicación es capaz de nadar en una piscina olímpica con profundidad de 3 metros, Mateo es la luz que brilla más fuerte en nuestra familia, es un maestro de vida, nos enseña a ser pacientes, a valorar cada paso que da, a ser agradecidos con el universo por tener el ser humano más bueno y feliz entre nosotros.
Mateo Mejia Maya
My daughter has changed my whole life and I always have hope in God that what is to come will be even more beautiful.
لقد غيرت ابنتي كل حياتي ولدي دائمًا أمل في الله أن القادم اجمل
There are 3 moments I am so grateful for... Leaving NICU with baby Gabriela breastfeeding so well, the first time she clapped her hands and when she took her first independent steps. Thank you FAST for also bringing hope to our family.
My recent Moment of Hope was in the car, where my son, Ben, likes to direct the music we listen to. His brother, Charlie, has been obsessed with a particular song lately, the title of which I have not added to Ben's talker. Ben requested, "Charlie music." I responded, "Ben, I'm driving right now, and I can't change the music. Besides, I like the song we're listening to." Ben, "Not good." I LOVE hearing him communicate, and I look forward to the day when he is not limited to what is on his talker, I can know what BEN's favorites are, and I can truly know him in a way I feel like his current communication limitations keep me from knowing him.
JULIAN tiene 9 años con los cuales nos enseñó que todo lo que queremos lo podemos hacer y lograr tanto como familia y pareja, nos enseñó lo SIMPLE de la vida que con tan solo una sonrisa puede llenar los ♡ corazones más duros, que un simple abrazo se convierta en la felicidad más grande, nos enseñó a ser persona en este mundo que esta tan difícil de poder compartir, simplemente es la razón de vivir. TE AMAMOS
When I manage to stand up and Take my first step without support
Santiago Romero Salazar
Our perfect Angel is 19 months old and his name is Rhett. Rhett makes us proud every single day and he never fails to bring a ray of happiness into every room he comes into. Our most recent moment of hope was about a month ago, Rhett transitioned from floor to sit all on his own. He sat up with a huge smile on his face, he was clearly just as proud of himself as we were. Though this was a huge physical milestone for him, the part that brought us most hope was that this was the morning after we brought him home from the emergency room after his first cluster of seizures. He suffered 7 seizures in 3 hours and the very next morning learned a new skill. This showed us that this boy is so resilient and determined, nothing was ever going to stop him from achieving new goals. We are so proud to be his parents and can't wait to see him crush new skills little by little as he grows older and stronger
It was a simple moment, a moment where it was suppose nothing special was happening: a normal day in a normal week of a normal month, we (my wife and me) were sitting in the sofa watching TV meanwhile our daughter Carla was playing with her toys, she still cannot walk and stand alone without support, and suddenly she decides to go upstairs without assistance and she was facing one by one each step. Then, she looked at us and smiled so proud of what she has done.
We then knew she will get it, she will bring hope and the cure to our home.
In 1986 Elena's neurologist had told us that my daughter would NEVER be able to walk, among many other things, and in less than 6 months of this terrible diagnosis, one day in her physiotherapy session she took her first steps, tears of joy ran down our cheeks without saying a word just in case she stopped walking
In 2008 FAST arrived and for the first time we heard the word CURE! and our lives changed forever, from them we are working with a big HOPE, because now, we are sure that the CURE will arrive for all AS children
Ever since our diagnosis, when we read of all the “nevers” we would have to face, Michelle has always proved that wrong. The never we should all hear is that we should NEVER set limits for our children, the sky should always be your limit. I dream of the day I hear Michelle speak words, but hearing her voice through her AAC device gives me hope that I can hear her express what she wants and feels. Acknowledging this voice fills me with joy and love, and I know one day I will hear her speak words, and hear her voice, I want her to tell me EVERYTHING!
Desde que recibimos nuestro diagnóstico, cuando leiamos todos los "nunca" que tendríamos que enfrentar, Michelle siempre ha demostrado lo contrario. El nunca que todos deberíamos escuchar es que NUNCA debemos poner límites a nuestros hijos, el cielo siempre debe ser tu límite. Sueño con el día en que escuche a Michelle pronunciar palabras, pero escuchar su voz a través de su dispositivo AAC me da la esperanza de poder escucharla expresar lo que quiere y siente. Reconocer esta voz me llena de alegría y amor, y sé que un día la escucharé pronunciar palabras, y su voz, ¡quiero que me lo cuente TODO!
Stephanie Azout Chaki
A recent moment of hope for our son Louie, 6 years old, came over the holidays when his 4-year-old cousin, Brooks, had misplaced his favorite part of his favorite gift - the walkie-talkie to his new police uniform. Brooks was crying in his dads arms. Louie walks into the living room, pats Brooks on the back, and hands him the missing toy that he had found in a pile. Louie smiled so big when Brooks immediately stopped crying and was happy again. On the way home Brooks said to his dad "It is so cool that Louie's brain is working better."
There have been many moments of hope that have carried us through the tough times. The one I hold on to lately is the first day I saw her come out of her fully inclusive school holding hands with two girls who told me “Alina is my best friend.” Knowing my daughter was able to create and sustain her own relationships gave me hope that she wouldn’t depend on me for everything and that she could fill her life with meaningful connections on her own.
San Diego, CA
La capacidad de entendimiento que tiene nuestra princesa Isabella quien cumplirá Dios primero 9 años el 27 de febrero. Cada paso que da con dificultad nos muestra su valentía de afrontar la vida, esa sonrisa interminable que ilumina a todos los que estamos a su alrededor. Y cuál esperanza futura pues que exista una cura o tratamiento para todos nuestros ángeles.
Isabella Ramirez Salas
San Isidro, Heredia
We have our angel, her name is Isabella. When drs, physicians or therapist ask us what are our goals with Isabella we always answer that we her to be as independent as possible, but our first goal that Isabella walks. After 3 and a half years she took her first steps without assistance, it was a short distance but it was a huge accomplishment for her and a huge joy for us. This told us that she is making progress and that she probably will walk on her own.
She was so motivated to grab some toys at target that I decided to let her go and then this happened!!! Jan 20th, 2023
A few months ago, I was sitting at our dining room table with Elijah and his 13-year-old sister. At some point, I asked her what was on her schedule for the coming week. As she started rattling off a list of things, Elijah began pointing to himself and making this little squinty smiley face. I assumed he was just being silly, so I made a funny face back at him. He got serious and shook his head no. We went back and forth like this for a bit, with him getting increasingly frustrated until he finally gave up. Fifteen minutes later, I was going through his knapsack and saw a note home from the school announcing that the following Wednesday was... picture day. He was trying to tell me and his sister what HE had planned for the next week.
However much he manages to express, however much potential it seems he has, there is an ocean more in there. I am so excited for a future in which it can be unleashed!
Harper has the ability to change the tone in a room & she is a light that shines brightly! I love her charm & the way she brings out smiles in everyone she meets. Harper will be 11 this summer, and she already accomplished several things that AS said she couldn't.
We can & we will!
#dreambig #cureangelmanNOW #harpershope
Me llamo Rocío y mi familia me ama y acepta tal y como soy tengo más días buenos que malos, ya que siempre mi mamá trata de compensar esos malos días con su amor.
tengo 13 años y he aprendido a valer me dentro de mis limitaciones por misma camino solita sin ayuda, entiendo todo lo que mamá dice y cuando está molesta porque no me he portado bien me gustan las visitas pero me alteran, ya que quiero tener toda su atención y eso por e nerviosa a mi mamá a veces pellizco y pienso que es un juego pero a los demás no les parece chistoso porque les duele, cuando mamá trabaja mi abuelita me cuida y gracias a ella también aviso para que me lleven al baño en el día no uso el pañal solo de noche.
Los Angeles, Chile
My son River has been battling seizures since he was 9 months old. I started to feel like this was going to be our life forever until we finally found the right meds that took him from 20 seizures an hour to maybe 2 or 3 a day. My moment of hope was watching my son be able to play on the floor, independently without the fear of falling over. We can finally enjoy our lives without so much fear.
Para nosotros cada día sin una crisis es un momento de esperanza, cuando dijo su primera palabra, cuando logra hacer una raya en un cuaderno, cuando va al baño, cuando intenta hacerse el gracioso, pero sobre todo cuando notamos que ha comprendido algo nuevo para él, todos esos momentos son de gran esperanza y sabemos que habrá muchos más.
Evelyn works so hard in therapy 5-6 days a week.. It has been so rewarding to see her on the “cusp” of many skills. If anything I have gained from having a child with AS, is patience! Well, today Evelyn has began rolling consistently from her tummy to her back. It feels like we have witnessed one of her first major milestones! We are thrilled and amazed with how hard Evelyn works! This is just one of many moments of hope I look forward to sharing 🙂
My daughter, Scarlett, age 5, finally and confidently took independent steps! Seeing her so proud of herself while she was walking towards me was my moment of hope!
My moment of hope is when Orion used his talker to have a great conversation!!!
nanny: Orion, in your lunch tomorrow do you want apples or oranges?
nanny: Sorry, Orion we don't have grapes. So do you want apples or oranges?
Orion: get grapes
Nuestros momentos de esperanza han sido muchos ....primer cuando logro tomar una cuchara y comer solito, cuando dió sus primeros pasos con apoyo ya más esperanza cuando logro caminar solito. Cada logro es un momento de esperanza, de luz, de fe, de que hemos dado lo mejor en esta lucha.
Ethan is 22 and always surprising us with what he does manage to communicate in his own ways. A couple of days ago, I had gone through our normal morning routine. I wake him up, we strip the bed and his clothes, we potty, bathe, get dressed, head downstairs, take meds, put on shoes, get the baggy of cheerios for the bus and take a drink. We then head for the end of the driveway. That morning, Ethan got to the doorway and I had stepped out ahead of him as I usually do in order to assist him down steps in garage. Ethan planted his feet FIRMLY and put his hands in the doorway on either side to say, “Nope! I’m NOT going.” I told him to show me what was wrong. He turned, reached for his backpack (that I had forgotten to grab), and made an Ethan noise. I had forgotten his bag and he had not. I grabbed his bag while praising him for helping me remember and off to the bus we went. It is these little moments that remind me that he is so perceptive, and knows so much more than I give him credit for. He is pure joy and he is truly my hero.
Cuando obtuvimos el diagnóstico de Andrea recuerdo que nos decían que no sería capaz a de lograr hacer actividades, hoy en día Andrea entiende las indicaciones e intenta ayudarme. Es una niña muy inteligente.