My name is Alexis Markowich and I was diagnosed with juvenile onset tay-sachs on Aug. 4, 2005. On Nov. 11, 2005 our insurance company approved my cord blood transplant. On Dec. 30, 2005 I received my cord blood transplant. Then on Sept. 14,2006 I joined the heavens above,
We MISS YOU Lexi Girl!! Love you to the moon.
Lexi was a beautiful healthy baby, born March 9, 2001. She was so happy and made everyone want to smile. She was so unaware of the awful disease that was destroying the cells in her brain. Six days after our diagnosis (she was four) we found Dr. Kurtzberg online. We went from no hope, to hope to give Lex some quality of life. What quality we did not know, Lex was the first Juvenile onset child to be transplanted at Duke. Transplant seems to hault the progression of the disease in infantile onset children. It has only been a few years and a few children. The future is unclear. Then there were three...Jashaia was transplanted two weeks later and two weeks after that was Dakota. (The Tri-Angels!) We want everyone to pray for Lex and everyone who is or has been on 5200, also check back often. Everyones well wishes make mom and dad hang in there and be strong. Believe in miracles, we could all use one once in our lives.
Alexis fought like hell. The bacteria in her blood was to strong for her weak immune system. She will fight no more, but run, play, and do things Tay Sachs disease never allowed her to do...be a "normal" child.
WELCOME TO HOLLAND
by Emily Perl Kingsley
I 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 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 out and buy new guidebooks. 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... and 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 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.
We have been to "Italy" with Lexi, we just got detoured on our trip. Both places are very rewarding, just totally different worlds!