OK, so for a long time I have consciously tried to avoid getting into the blogging “thing” but despite my repeated attempts to stay anti-establishment while everyone I know has been jumping into the blogging world, I realize that this is the best medium to get my message across in mass, and educate as many people as possible to what we are doing.
Let me start from the beginning. Forgive me, but this is going to be an extremely long post. My name is Brian Levin, I am 34 years old, a
wireless software entrepreneur living near
To articluate our situation, I thought it would be best to
tell you all the same way we told our friends and family as our knowledge of
events has unfolded. Therefore, let me
recount by reprinting the emails I sent out when we learned what was going on:
-----Original Message-----
From: Brian E. Levin [mailto:brian@mobliss.com]
Sent:Friday,
November 22, 2002 11:31
PM To: brian@mobliss.com
Subject: The Levin Family
To our
Family and Friends:
As most of
you know, Allison and I have had a pretty hectic and amazing week, capped off
with the birth of our 3 beautiful children. The kids are battling the
problems that all premature babies have, but rest assured they are doing very
well, and getting better every day.
A few days
ago, we learned that our son Sam was born with a condition called Trisomy-21,
commonly known as Down Syndrome. This means that Sam has an extra
chromosome in each of his cells. Children with Down Syndrome have some
physical differences, and cognitive ability and development is hindered.
We do not know how Sam will be affected by this, as it varies widely with every
person. What we do know is that people with Down Syndrome live full,
wonderful, and independent lives. They can achieve things that would
amaze all of us, as I am quickly learning, and soon to witness
firsthand.
Since we
found out, we have felt a wide range of emotions; shock, surprise, denial,
anger, rage, regret, sadness, sorrow, fear….and most importantly, love.
Unconditional love for our beautiful, healthy baby, and the overwhelming
feeling that our family will be strong, and overcome by the love for life that
we feel, and the blessing that we have experienced by having our babies come
into our lives. Sam is the most beautiful person I have ever known,
and I cant imagine what life would be like without him, or his brother and
sister for that matter.
We know
that the journey ahead of us will not be easy. Raising triplets is an
incredibly overwhelming task, and raising a child with DS can be difficult and
taxing- when you combine the two, it may seem all but impossible.
However, I feel it is best summed up by a quote we received from some dear
friends that said “Life does not put things in front of you that you are unable
to handle.”
We are not
writing this to get your sympathy. Please do not feel sorry for us, or
show us pity as that is not what we need, nor want right now. What we do
need, is your continued love and support as you have always given us in the
past. Help us by funneling your positive energy toward us to help us
create the most caring, loving household on the planet. We will do
whatever it takes to make sure that all of our children have all of the
opportunities to achieve their dreams and goals, if they work hard enough to do
so.
Sincerely,
Brian,
Allison, Sam, Alexa, and Jakob Levin
So for the next 3 years and 9 months, we learned how to deal
with having a child with Down Syndrome, and although we knew our situation was
tough with multiples and a disability, we felt we were equipped to handle
it. Early on, I was deep into building
my company Mobliss, and we made sure Sam had the best early intervention and
therapy possible. I eventually sold my
company, and we decided to relocate from
Then, on one seemingly normal and insigficant Friday, our
lives changed forever…. Again, the best way to explain it is in the email I sent
out later that weekend.
From: Brian Levin
[mailto:brian_levin@comcast.net]
Sent: Saturday, September 30, 2006 11:28 AM
To: 'Brian Levin'
Subject: Another one of life's twists and turns....
Importance: High
Friends and
Loved Ones:
I certainly
thought that 4 years ago, when I wrote an email describing Sam’s condition, it
would be the hardest email I would ever have to write. Well, it turns out
I was wrong.
What
started out as a perfectly normal day yesterday turned into one of the worst
days or our life. Allison had a long standing appointment for Sam at a
doctor that specializes in muscular development and therapy. She went to
that appointment, and brought along Jake as an afterthought. To make a
long story short, the doctors saw a lot of apparent signs in Jake that signaled
a muscle disorder, and he immediately had blood drawn and tested
We were
completely shocked and horrified to learn a few hours later that it is very
likely that Jake has some form of Muscular Dystrophy… first question:
What is Muscular Dystrophy?
The muscular dystrophies (MD) are a group of more than 30 genetic diseases
characterized by progressive weakness and degeneration of the skeletal muscles
that control movement. Some forms of MD are seen in infancy or childhood, while
others may not appear until middle age or later. The disorders differ in terms
of the distribution and extent of muscle weakness (some forms of MD also affect
cardiac muscle), age of onset, rate of progression, and pattern of inheritance.
We don’t know what type or form, or anything about the
severity at this point. We wont know for about a month while they test
Jake’s DNA. It was likely caused by a genetic mutation, since no one in
my family or Allison’s family has any history of the disease. (Neither of
us have any family history of Down Syndrome, either). After researching
MD, it was clear that Jakes muscle tightness and difficulty walking which we
thought were due to prematurity were really indicators of something else.
OK, so next question
What is the prognosis?
The prognosis for people with MD varies according to the type and
progression of the disorder. Some cases may be mild and progress very slowly
over a normal lifespan, while most others produce severe muscle weakness,
functional disability, and loss of the ability to walk. Some children with MD
die in infancy while others live into adulthood with only moderate disability.
So at this point, we don’t know where Jake is for quite some time, but I know that he is so strong willed and such a fighter, that he will be the best that he possibly can.
OK, now here’s the really shitty part
Is there any treatment?
There is no specific treatment to stop or reverse any form of MD. Treatment may
include physical therapy, respiratory therapy, speech therapy, orthopedic
appliances used for support, and corrective orthopedic surgery. Drug therapy
includes corticosteroids to slow muscle degeneration, anticonvulsants to
control seizures and some muscle activity, immunosuppressants to delay some
damage to dying muscle cells, and antibiotics to fight respiratory infections.
Some individuals may benefit from occupational therapy and assistive
technology. Some patients may need assisted ventilation to treat respiratory
muscle weakness and a pacemaker for cardiac abnormalities.
So what now?
As you can probably imagine, our family is completely
devastated right now. I cannot think of any worse situation for our
beautiful son. Right now it is time for us to grieve, be sad, mourn, and
get all feelings of negativity out. The thing is, we have been
through this process before with Sam and Down Syndrome, so in some strange way,
I feel like we know how to handle this. I am actually very glad that we did not
find out about this until now, as there was not much of anything we could do…
as they say, ignorance is bliss
But you know us. Allison and I are incredibly strong
people. We will go through this grieving period, which we hope will be
brief, and then we will go on living our lives better than before. Once
the grieving period is over, we will not allow any negativity in our household,
or in our lives. As you may know, I have recently started up a new
wireless business with very promising prospects. I will continue to build
this company, in fact, this situation if anything motivates me for success even
more.
What we will do is focus on our lives right now, and making the most of our time with our family, and giving Jake the opportunity to live his life to the fullest. Rest assured, we will make sure he gets the best doctors, therapists, and help that he possibly can, and we will become strong advocates for MD. In the short time I have been researching, there are many promising Gene therapy treatments that are being developed, and we will support the research efforts, and hope that we can benefit from those efforts.
So, how can you help? Well, first off, don’t feel
sorry for us… we know how supportive everyone is, and we thank you for your
kind words and feelings. Please continue to be tremendously supportive
and generous. Most importantly, enjoy our family with us as we make the
most of life…For those of you who live out of town, come visit us. We
have a beautiful home in
We are truly fortunate to have friends like you. Thanks!
Regards
The Levin Family
As said, treatment may include physical therapy, respiratory therapy, speech therapy, orthopedic appliances used for support, and corrective orthopedic surgery.
Kevin
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