For almost five years, we have learned how to turn uncertainty into happiness thanks to the powerful smile of our son, Alejandro.
Ale was born at 25 weeks. He has spent over half his life in and out of hospitals. He has Sturge-Weber Syndrome — a rare genetic vascular disorder that affects the brain — and cerebral palsy. Day to day he fights like a trooper to enjoy life despite his multiple motor and cognitive disabilities. He is unable to walk, sit, eat, or move without assistance and/or support. He requires specialized equipment to manage his daily life, ensure his safety and prevent injury.
Despite his medical history, he is a happy boy who loves his family and wakes up every day with a big smile, especially if it is a school day.
For the past two years, Alejandro has been attending Roosevelt Children's Center, a wonderful preschool in New York City for children with special needs. Here, he receives a range of therapeutic services, as well as a language-based curriculum. Ale turns five in July 31st of this year and according to Department of Education (DoE) regulation, he must change schools in September.
He has made incredible progress while at Roosevelt. There is no other public school where Alejandro would receive this level of care and therapy. He has made remarkable progress to overcome his limitations thanks to Roosevelt's amazing and caring staff. We feel it is crucial for Ale's progress and well-being to go to a similar school where he gets the same high level of service. That place is Pathways Children's School. To do so, we must prove to the DoE that it would be instrumental for him to continue his education in this private institution with only 12 students with various neurophysiological disorders. If it is not possible, we believe Ale should remain at Roosevelt for one more year. We needed to hire a neuropsychologist to evaluate Alejandro, and retained an attorney to help us navigate the DoE.
In addition to this expensive legal crusade, we are trying to raise funds to cover some needs that are also vital for his development, safety and well-being. These are some of those "wishes" that we would like to make come true to celebrate his life and ensure he continues to improve:
ALE’S CUSTOMIZED WILD THING CAR: Ale's teacher, Mr. Yusuke Namiki, has been an incredible source of motivation for him. He designed a motion sensor that Ale wears as a bracelet to communicate using an Ipad, play games with his friends, read e-books and more. His new project is an adapted motorized Wild Thing car that Ale moves with the sensor on his arm (click here to see the amazing video of the first trial). The car is not only a perfect toy for Ale (who loves movement and high sensory experiences), it is the first step for him to be able to ride a motorized wheelchair in the future. To complete this project, we will need $2,100.
WHEELCHAIR ACCESIBLE VAN: Luckily, Ale is growing and becoming a big boy, too big to fit in a car seat and who requires to travel and move on his wheelchair at all the times. Our old Chevy Blazer 2002 is not in good condition and it is not accesible. This is a real challenge, because a wheelchair accesible van will cost between $20,000-$45,000 (used or new).
NEUROLOGICAL EVALUATION AND LEGAL FEES: We estimate that the cost of the neuropsychological evaluation and legal fees will be around $9,000.
We know we can count on you to fulfill these dreams, so any little contribution will be always appre
ciated and "paid back" with "Ale's eternal smiles".
Thank you from the bottom of our hearts!
Alejandro and his family
- Lauren Draper
- Carl Nelson
- Maria Fernandez
- Eric Przybylinski