Lily is a unique 1-year-old who loves playing with her 5-year-old brother, coloring, eating and being outdoors. Born with a severe skull deformity called craniosynostosis and a rare ge¬netic condition called Saethre-Chotzen syndrome, doctors referred the family to Children’s Hospital Boston within minutes of her birth. There she had her first skull surgery at just 2 months old and was helmeted for the next six months. Regular medical appointments and helmet adjustments kept her busy until Lily had skull reconstruction performed at 15 months. The outcome was a great success and allowed the family to reduce the regular trips to the hospital to once a month. It is probable that Lily will have another skull surgery and a few minor procedures, but today she’s a proud graduate from physical and occupational therapy. She is growing into a beautiful little redhead with a loving personality.
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06/17/2011
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2011 FAD Twitter Feed
Cheer on the All-stars
Children's hospital patients and their families are traveling from across the U.S. for the N.A.C.H. Family Advocacy Day, July 25-26, 2011. They will tell Congress about the importance of children's health care coverage and health issues. This site will feature a different participating child each week until the event. Leave a comment and cheer on our All-stars for children's health!
About N.A.C.H. Family Advocacy Day
- In its seventh year, N.A.C.H. 2011 Family Advocacy Day brings patients from children's hospitals and their families to tell their stories to lawmakers on Capitol Hill. Find out more about Family Advocacy Day.
- Disclaimer: The views and opinions expressed in individual posts are strictly those of the author(s) and in no way represent those of N.A.C.H. N.A.C.H. assumes no liability for the information therein and extends no implied or expressed warranty or guarantee of accuracy. The receipt of unsolicited ideas by N.A.C.H. does not obligate N.A.C.H. to keep these ideas confidential, nor does it obligate N.A.C.H. to pay the person who submits them.
© N.A.C.H. 2007
Lily, we are so glad that you will be with us in DC next month!
Posted by: Amy DeLong | 06/21/2011 at 10:34 AM
What a brave girl. Lily looks great; what an adorable little girl.
Posted by: Melissa Shannon | 06/21/2011 at 11:14 AM
We can't wait to see you in July! Thank you Boston Children's for everything you've done and continue to do for all!
Posted by: Jackie L. Watson | 06/21/2011 at 05:04 PM
Lily I am glad to know how special you and your family are. I love having you guys in my life
Posted by: deanna thompson | 06/22/2011 at 11:16 AM
Go git 'm tiger! You are just precious.
Posted by: Denise Johnson | 06/23/2011 at 05:04 PM
She is an inspiration. Unfortunately, we lost our son, Carson, to an idiopathic cardiomyopathy in 2009 at CHB, but we are hopeful that many other children have a better outcome and continue to lead happy and healthy lives. We wish you and your family nothing but the best Lily!
Posted by: Jessica Tyre | 06/23/2011 at 05:27 PM
Way to go Lily! Congratulations on completing OT and PT. Keep it going and never give up. Your such a beauty!
Posted by: LaTanya | 06/23/2011 at 06:40 PM
Yay Lily! Such a strong,beautiful little girl you are! Keep up the good work! Positive energy sent your way!
Posted by: Susanna Macdonald | 06/23/2011 at 06:55 PM
Congrats, Lily, on your graduation from PT and OT! Way to go! Keep up the good work and never give up! My daughter didn't ever give up and Has grown up to be a lovely 14 year old teen ager! She was born with a congenital heart defect and has beaten many odds! Keep it up!
Posted by: Berta Paneccasio | 06/23/2011 at 09:34 PM
WHOO HOO - go Lily. What a cutie and her parents are the greatest too!!
Posted by: Theresa D'Andrea | 07/05/2011 at 08:42 AM
Hi Lily,
Looking forward to having you here in DC next week! We're going to make sure you have lots of fun!
Justin, National Association of Children's Hospitals
Posted by: Justin Beland | 07/17/2011 at 11:31 PM
We leave in 3 more days! Can't wait!
Posted by: Jackie Watson | 07/21/2011 at 07:24 PM