Search



Hi everyone, we are the Widezki Family from Israel and we are proud to introduce you all to our daughter Noy who celebrated her BAT MITZVA on February 13, 2015.

All of you know that children’s birth is an exciting event.

All children land on their parents happily even if those moments involved concerns and excitement. But Noy came with a big drama, and we were young parents, without realizing that we would be forced to make difficult decisions.

Noy born on February 9th, 2003 and was diagnosed as MSUD classic in 14 days.

After 4 days in PICU we were told that Noy has MSUD and she must have Hemo-Dialysis as all her body was already toxic with leucine levels of 2,340mg!!!!

Today, we all know that we have chosen this gamble right for us and for Noy.

We chose to raise this special girl, as a normal child, of course with food restrictions however we never prevented her from experiencing flavors. I remember strongly when we participated in our first symposium in Atlanta 2004 and we asked some families “tell us what is the daily menu of your children?”, Most of them answered: “Potato chips and all forms of potatos”.

Without press and cameras we ran this marathon race without breaks, and some falls when we went to the hospital, but we always get up and keep running. Noy has grown to be a girl called wise and determined that nothing stands in her way. She knew from a young age always to get up and to move on.

Life is not easy for her but absolutely possible.

Our mission to all of the MSUD families is to show that MSUD can be managed.



Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

Read More

From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

Read More

MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

Read More

20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

Read More

Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

Read More

NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates