Featured pictures
Welcome to our Site!
So many great things going on right now as we welcome this great weather! Julia learns new things everyday and is really starting to talk. She says doggie, daddy, fishies, shoes (of course!) just to name a few. Christian just started to potty train this weekend and is doing great. We hope to see everyone soon!
Recent pictures & activities
At the Beach- May 2009
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April & Easter 2009
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February & March 2009
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Christian & Julia 03/17/09
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Happy Birthday Julia!
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Comments
3/28/2009 3:50:08 AM - 000075634411
Beautiful family Bro! Looking foward to getting togther and grilling some beef. Let's kick our feet and drink some red!!
1/26/2009 1:36:33 AM - 002054899164
Such a surprise to see my name mentioned on your website! Your kind words and generous support are so greatly appreciated. What absolutely beautiful photos of your children! They are so fortunate to have such loving parents. Looking forward to meeting with you again. Anne Marie Florio
1/7/2009 2:54:09 AM - 000057803136
Thank you so much for sharing these pictures with us! They are all so great! The kids are just so cute! The website is wonderful as well! Thanks again!
11/10/2008 7:28:56 PM - 002039814826
It is so great that Sophia's fund is being put to such good use. What a wonderful way to use the money. The pictures look fabulous. You are so organized! Hope to see you soon.
11/9/2008 7:49:28 PM - 000043450676
Love the website! Great news about the donation and the amount will hopefully provide support to do great things in research.
11/4/2008 2:48:43 PM - 002005952965
I am blessed.
Can't wait to see everyone at Christmas.
Love Dad
Latest news
Sophia Avia Rosone Memorial Fund
Our Next Goal
Our next wish for Sophia's fund is to raise money to donate to research for VLCAD. So much about Julia's condition is unknown and it will only be through research that doctors and researchers will uncover some of these mysteries. Julia and Sophia are being written up in the New England Journal of Medicine to show other doctors who treat children like them the anomolies in their cases, even though they carry the same mutations.
Past Donation
Because of the love and generous support of our family and friends, we've been able to donate to the section of Metabolic Disease at The Children's Hospital of Philadelphia. This donation, in the amount of $50,000, has been used to secure the services of a Care Coordinator who will enable the better management of children with the complex problems that typify the inborn errors of metabolism. On Tuesday, 11/4, we had the opportunity to meet Anne Marie Florio, the social worker who has been hired in this position. We shared with her Sophia's story and she met and played with Julia during her appointment. Anne Marie has been key in assisting the caring doctors and nutritionists to assist families with the complicated hospital and insurance systems by assisting them with medications, special formulas and referral appointments.
Our Sweet Angel
VLCAD
As most of you know, Julia was diagnosed with VLCAD right after birth. VLCAD is a is a condition that prevents the body from converting certain fats to energy, particularly during periods without food (fasting). The enzyme that one needs to oxidize fats is deficient in Julia (we've recently found out that Julia's enzyme works at 11%). We have since found out that Sophia unknowingly had the same condition and Julia was the key in solving that mystery. VLCAD is completely controllable with diet management (life long low fat diet) and taking extra care of her if she develops an illness. We are grateful to Julia's doctor, Dr. Marc Yudkoff, and the team of nutritionists (Christie & Jessica) who assist us with Julia's care. They are so caring and always available for the million questions we have.
Favorite Links
7/10/2009 2:58:49 PM