Looking forward

Many of you have followed this blog over the past year.  We have not always been great at updating it - in fact we have been pretty bad.  This is an important post for you all to read.  First, for those who aren't up to date - Klara is doing great.  She just had her 3rd surgery to get ear tubes and it was the easiest thing we have been through.  She has really come so far.  But as most of you know there is no cure or treatment for her muscle disorder.  So, I am asking you to take a few minutes to read the following:

I have been a runner for longer than I can remember; it is part of who I am. Now, I run for a different purpose, my beautiful daughter Klara. Klara was born with a rare congenital muscle myopathy – Central Core Disease. She carries it recessively which is even rarer and less is known about it. Her neurologist cannot tell us if she will ever walk or even stand, if she will need support breathing later in life. We do know that Klara has a more severe form of this disease because it presented so strongly at birth. When Klara was born she did not have strong movements, she had a very weak cry, a weak swallow and no gag or any other reflexes. She was taken to the NICU and after a few days she was transferred to the Children’s Hospital of Philadelphia. A hospital that had the specialists she needed. She spent 77 days there and had more procedures then I care to remember, but unfortunately will never forget. When Klara was 5 months old we got a phone call from her neurologist telling us her diagnosis. Instead of celebrating babie’s firsts, Klara’s first year was filled with multiple hospital admissions, doctors appointments, surgeries, physical and speech therapy sessions, and the constant fear of what the next day would bring. Klara recently turned 1 and she has shown so many improvements. She has gone from not being able to hold her head up when she was held, or even breathing on her own to sitting all by herself and playing with her favorite toys. She is beginning to put weight on her legs for a few seconds and is able to reach for toys, but every movement is a challenge, yet she does it over and over again with a smile on her face. Though she is only 14 ½ pounds she has the heart and courage of a lion. On a daily basis she endures painful and scary events like suctioning and retching but she always looks at you when it is over with a smile.


I am joining Team Cure CMD and running The Long Branch half marathon with the hope of raising money and awareness for Klara’s disease, hoping that a treatment or cure will be found. The distance will be easy for me, but the life long battle to raise awareness for this disease is just beginning. Klara needs your help. Click on the link below and consider donating to Cure CMD. $5, $10, $25, everything helps. Every donation will bring us a little bit closer to finding a cure for my daughter and so many other children around the world who were born with muscle disease.

I had an emergency C-section and do not clearly remember seeing Klara right after she was born. However, after my recovery I was taken into the NICU to see my baby. I immediately reached into her incubator and she squeezed my finger. I knew at that moment she was going to have the strength and courage she would need to conquer anything.

Please click on the following link and look for my picture.  There are several people raising money for Klara so feel free to support any one of us! 
Thank you for you continued thoughts and prayers!!!
Emily

http://curecmd.org/events/njmarathon2011