Alejandro was a 25 weeks premie. He only weighed one pound 13 ounces and measured 17 inches. Since the first days, he showed the signs of Sturge-Weber, a vascular syndrome that affects the brain. For four months he lived in the NICUs of Jersey Shore Medical Center, Neptune, NJ, and the Children's Hospital of Philadelphia (CHOP). On July 31st, Ale will turn five years old. We decided to create a fundraising campaign to give him "three birthday gifts" that will allow him to have a better quality of life.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
Five years later. In addition to his diagnosis with a rare vascular syndrome that causes seizures, glaucoma and a Port-wine stain of his face, other complications also affect Alejandro's motor and cognitive development: cerebral palsy, asthma and chronic respiratory problems, hypothyroidism, among others. Despite his problems, Ale is a happy child who loves being with his family and who always smiles in the morning when he goes to school.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
At the school. Ale gets up every morning at 6:00 am or 7:00 am to go to school on a school bus. Nothing is more fun for him than feeling the vibration every time the unit a bumpy road. At his preschool, he stays from 9 am until 2:30 pm. Ale has an intense program of physical, occupational and speech therapies. His teacher, Yuseke Namiki, is always innovating with new technologies and developing Alejandro' skills in a very fun way.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
Bike therapy. One of the activities that Ale enjoys most at school is riding an adaptive bicycle. His nurse Anna Jezz makes him doing it for about 20 minutes or more every day. Thanks to her dedication, Ale is able to move the bike by himself over short distances today. The bicycle is part of the physical therapy program to fortify his legs and improve coordination. Crédito: Carolina Ledezma
Learning to communicate. Ale uses an Ipad to play and communicate at home and at the school. His language center has been affected by surgery and brain injuries, so he cannot speak. His teacher created a motion switch with which activates his computer by moving his arm. It is still too early for him to be able to use this combination of technologies fully, but every day he improves little by little. With the help of his speech therapist Paulina Smietanka, his occupational therapist Asya Rabinovich and his vision therapists Lauren Schneider, he has learned to touch the screen with his hands to play and activate functions. And every day he "talks and sings" with his grandmother through Facetime.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
Go Ale Go! One of the toys that his teacher and Bob Paradiso, of Access Redefined, customized for Ale is a Mattel Hot Wheels Wild Thing ( see the video). Using his arm to activate the motion sensor he uses as a bracelet, Ale moves the car slowly by himself. "Alejandro can greatly benefit from the use of a custom adapted motorized car. Not only will it give him that independence to move about in a safe way, but it can hopefully help Alejandro to build upon skills such as motor control, consistent switch activation, faster reaction time, understanding stop and go, and understanding directions such as left versus right," according to physical therapist Diana Kudelko.
Carolina Ledezma
Carolina Ledezma
A throne for the king. At home and school, Ale requires using many special equipment such as a Rifton activity chair, a wheelchair, a hygiene system, a stander and a gait trainer, but he does not like to use them for long time. With the help of the team of Adaptive Design Association, a foundation that fabricates equipment with recyclable materials for people with disabilities, three students from the Columbia University Program in Physical Therapy and professor Lisa Yoon designed a chair for Ale to play on the floor. The seat, made of corrugated cardboard, has a back with a certain inclination and a tray so that Ale keeps his head up and uses his hands to play, as well as a leg so that he does not move forward.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
Standing up. Ale's motor limitations, as a consequence of his cerebral palsy and of a combination of hypertonia and hypotonia that affects his body, make it very difficult for him to stand, walk and sit. One of the key equipment to help strengthen his muscles is the stander. He must stay for at least two hours a day on this device everyday. Alejandro receives physical, occupational and language therapies three times a week at his school, but also at home.
Carolina Ledezma
Carolina Ledezma
Home therapy. Each day, Ale works with special itinerant teacher Michelle Then to reinforce skills learned at preschool. Twice a week, he receives one hour of vision therapy, which has helped to broaden his visual field and focus better, even though his vision is very poor and his brain does not process the images clearly. One of the biggest advantages of Ale is that he is always happy and loves his therapists.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
Fun exercises. Physical therapist Lisa Yoon has worked with Ale since he was almost two years old. There is not a day when Ale does not want to work with her. He learns how to sit down, standing up and crawling (something normal for other children, but very difficult for him). Also, every Wednesday he works with speech and feeding therapist Darcy Abrams. Because of his low muscle tone, Ale cannot eat food by mouth. With intensive therapy disguised with music and caresses, he is learning to chew and swallow without risk.
Crédito: Carolina Ledezma
Crédito: Carolina Ledezma
A swing at home. A swing helps children develop motor skills such as balance and coordination. Having one at home has been one of the best ideas to entertain and train Ale every day, especially winter or rainy days. Ale loves to move very fast and in circles in the swing, as well as to stand still or trying to move his legs while grandma sings. There are not many toys that he can use and they are usually very expensive.
Carolina Ledezma
Carolina Ledezma
Fish in the water. In the warm water, Alejandro seems to be free of all limitations. He moves his legs and arms like never before. With the help of a special life jacket or a floating device that keeps his head above water, he is as happy as a fish. Aqua-therapy and swimming improve muscle tone, coordination and endurance. Twice a week, during spring and summer, Alejandro participates in an intensive aquatic therapy program that combines physical and occupational therapy at NYU's Rusk Institute of Rehabilitation Medicine in New York.
Carolina Ledezma
Carolina Ledezma
Therapy with horses. Every Sunday, Ale goes to the Forrest Hills Riding Center, of the non-profit Gallop NYC, to receive 30 minutes of hippotherapy or assisted equine therapy. "The rhythmical and 3 dimensional movement of horse to the patient resembles the movement of the pelvis during walking. The walking pattern of the horse imitates the walk of a person and through the repetitive pattern the brain and body develop this pattern," explains the pediatric physical therapist Dianne Garcia. In addition to the immediate response of his body when galloping and the progress on following instructions, Ale has developed a very special bond with Bush, the pony he rides frequently.
Carolina Ledezma
Carolina Ledezma
Graduation day. Ale graduated from preschool at the beginning of June. In September, Alejandro will start classes in a new school. Social workers, neuropsychologists, therapists and special teachers confirmed that he needs highly specialized instruction in a classroom with fewer than six children. There is no public school in New York that offers the right conditions for him and there are not many private schools either. We trust that wherever he goes, people will know that his smile is the indelible sign of his resilience
Carolina Ledezma
Carolina Ledezma