On March 30, 2011 our son Alejandro Kalamakuokalani Ako was born. At the age of five months he was diagnosed with Spinal Muscular Atrophy (SMA) Type I, a genetic disease of the motor neurons which affects about 1 in 6000 people. Alejandro’s muscles are extremely weak. He is unable to move most of his body, feeds through tube in his stomach and requires a ventilator for breathing. Fortunately SMA in no way affects his cognitive abilities, in fact Alejandro is exceptionally smart and social.
We remember very clearly those first devastating days after diagnosis, combing the internet searching for information about this awful disease that we had never heard of. Of particular importance were the multitude of personal websites documenting the experiences of families who are living with SMA. These sites brought us hope, courage and inspiration and allowed us to envision a life for Alejandro filled with joy and excitement. It is one aim of this website to continue passing that along to other families who follow in our footsteps. As it turns out, Alejandro has taught us more about what is important in life than we ever could have imagined. We love him more than anything and wouldn’t trade him for the world.
By now it has become a bit of a cliche, but I’m going to include this anyway because it well summarizes our experience. To follow is a poem about having a child with disabilites by Emily Perl Kingsley.
Welcome To Holland
© 1987 Emily Perl KingsleyI am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.
“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
As Alejandro’s parents we do everything that we can to help him compensate for and overcome his disabilities. We have high hopes and ambitious dreams that he will survive and achieve much in his lifetime. Alejandro is a smart kid and we strive to give him every opportunity possible.
As an engineer, programmer, builder and all around hacker I have particular skills which can help Alejandro. We recognize that technology will play an important role in helping him achieve his full potential. Another objective of this website is to share and document the ideas that I have implemented which have made life better for Alejandro. It is our hope that this information will benefit other children with SMA and similar disabilities.
Parenting in general is likely to spread a person a bit thin, parenting a child with a disability even more so. This site is updated sporadically as I find time. I apologize if I am unable to respond to comments or emails in a timely manner.