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Please support the Knights in the NYC Marathon |
Born 3 ½ lbs and kept in the NCCU for 52 days
Finally home from the hospital. 10 weeks old
Thanksgiving with hat hiding nasal feeding tube
during the day. 11 months old
Katie with feeding pump in backpack
21 hours per day. 1 ¾ years old
School photo. 2 ¼ years old
Playing with Dad at the beach in Rye. 2 ½ years old
Katie is exactly one year older than her friend
Whitney, yet much smaller
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Finally, when Katie was 14 months old and having met with numerous doctors, we found out why she had no interest in eating. She was diagnosed with the genetic syndrome called Russell-Silver Syndrome whereby the gene that tells her to eat doesn’t work properly. We are very fortunate to live an hour drive from the leading expert on Russell-Silver, Dr. Harbison who is at Mt. Sinai Hospital in NYC. I am running in the NYC Marathon on November 5th to raise money for The Magic Foundation (see below) which focuses on Russell-Silver Syndrome with the support of Dr. Harbison. We’re hoping that research will progress around certain health challenges Katie will face in about 6 years for which treatment choices today are painful and expensive. Katie's Story Katie is now 2 3/4 years old with a personality much bigger than her tiny body – she weighs what an average 12 month old weighs and her height is that of a 19 month old. Katie has had a number of medical procedures in her short life, most recently to insert a feeding tube into her stomach, and for 6 months I had to give her a growth hormone shot every day (these shots will resume in a few months and will continue for many years – not fun!). Since my husband and I both work fulltime (lots of medical bills!!), we are very fortunate to have Claire take care of our kids. Having been a nanny for 30 years, Claire knows what is "age-appropriate" for Katie and has had a huge impact on her development, plus juggling Katie's busy schedule of therapists for physical, occupational, feeding and speech development, and doctor visits. Claire is now an expert at Katie’s feeding pump which Katie wore in a backpack all but a few hours a day until recently - now it’s only 12 hours at night. Regardless of her petite size, it is important for us to remember to treat Katie her age. Like any 2-year-old, she and her brother (who is 4 1/2) fight over toys and wrestle with each other. But lucky for Katie, her brother has a very kind disposition. This is Katie’s second year at pre-school and, even though she is one of the youngest (and shortest) in her class, she is able to do nearly everything the other kids do. Katie can’t wait to get into the classroom and her language, physical and interactive skills have just blossomed (tremendous credit given to her teachers). Katie is much more susceptible than most to getting sick from the other kids, but we take precautions and are grateful it has worked out so well. Your Support If you would like to make a pledge to support my NYC Marathon run for Katie, please make a check payable to The Magic Foundation, and mail it to me at: NYC Marathon P.O. Box 54 Rye, NY 10580 |
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"Helping Kids Grow"
How The Magic Foundation Was Founded in 1989
"This imaginary scenario is the harsh reality that thousands of parents face each day:
Because we lived through it alone- MAGIC was born.
Say you take your child to the doctor because he just doesn’t seem to be growing right. He/she might be a picky eater. You try to push your concerns away by thinking well grandma was kind of small. But something deep inside you keeps nagging at you-telling you that something is not right. And so...just to be sure...you make an appointment with your child’s doctor.
Suddenly, you find yourself shocked as you hear, "Mr. and Mrs. Miller, I believe your son has a medical condition called (for example) Growth Hormone Deficiency. This is a rare disorder. And frankly I've never had another patient with this, so I’d like for him to see a specialist.” As a parent what do you do? Well I’ll tell you what we did-we went into parental protection overdrive! All senses were on high alert....panic, fear and confusion.
For us there was no MAGIC Foundation, but thankfully we did eventually find each other. We had children with Growth Hormone Deficiency. Three of us were from Illinois, one from California and the other from Oklahoma. We ran our phone bills through the roof, sharing details about our children’s medical treatments. We were our own self-made support group. We all studied, researched, and contacted everyone we could.
Little did we realize that our daily calls were the beginning of what would, one year later, become The MAGIC Foundation. We were legally incorporated October 29, 1989 in the state of Illinois. And recognized as a 501(c)(3) tax-exempt organization by the IRS. The humble "early days" forged the path of what is now recognized as:
The world's largest organization for growth related disorders."
Click on the link for more information on Russell-Silver Syndrome from the Magic web site.
The world's largest organization for growth related disorders."
Click on the link for more information on Russell-Silver Syndrome from the Magic web site.
Copyright 2006 Emily D. Knight. All rights reserved.