On March 30, 2011 our son Alejandro Kalamakuokalani Ako was born.\u00a0At the age of five months he was diagnosed with Spinal Muscular Atrophy (SMA)\u00a0Type 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.<\/p>\n
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.\u00a0As 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.<\/p>\n
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.<\/p>\n
\nWelcome To Holland
\n<\/strong>\u00a9 1987 Emily Perl Kingsley<\/p>\nI am often asked to describe the experience of raising a child with a disability \u2013 to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It\u2019s like this\u2026<\/p>\n
When you\u2019re going to have a baby, it\u2019s like planning a fabulous vacation trip \u2013 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\u2019s all very exciting.<\/p>\n
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, \u201cWelcome To Holland\u201d.<\/p>\n
\u201cHolland?!?\u201d you say, \u201cWhat do you mean \u201cHolland\u201d??? I signed up for Italy! I\u2019m supposed to be in Italy. All my life I\u2019ve dreamed of going to Italy\u201d<\/p>\n
But there\u2019s been a change in the flight plan. They\u2019ve landed in Holland and there you must stay.<\/p>\n
The important thing is that they haven\u2019t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It\u2019s just a different place.<\/p>\n
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.<\/p>\n
It\u2019s just a different place. It\u2019s slower-paced than Italy, less flashy than Italy. But after you\u2019ve been there for a while and you catch your breath, you look around\u2026and you begin to notice that Holland has windmills\u2026Holland has tulips. Holland even has Rembrandts.<\/p>\n
But everyone you know is busy coming and going from Italy\u2026and they\u2019re all bragging about what a wonderful time they had there. And for the rest of your life, you will say \u201cYes that\u2019s where I was supposed to go. That\u2019s what I had planned\u201d.<\/p>\n
And the pain of that will never, ever, ever, ever go away\u2026because the loss of that dream is a very significant loss.<\/p>\n
But\u2026if you spend your life mourning the fact that you didn\u2019t get to Italy, you may never be free to enjoy the very special, the very lovely things\u2026about Holland.<\/p><\/blockquote>\n
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.<\/p>\n
As an engineer, programmer, builder and all around hacker I have particular skills which can help Alejandro.\u00a0We 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.<\/p>\n
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.<\/p>\n","protected":false},"excerpt":{"rendered":"
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, […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":99,"comment_status":"open","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-18","page","type-page","status-publish","hentry","odd"],"_links":{"self":[{"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/pages\/18","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=18"}],"version-history":[{"count":10,"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/pages\/18\/revisions"}],"predecessor-version":[{"id":440,"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=\/wp\/v2\/pages\/18\/revisions\/440"}],"wp:attachment":[{"href":"http:\/\/www.hackingsma.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}