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Robyn

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1 reviews

Review for National Urea Cycle Disorders Foundation, Pasadena, CA, USA

Rating: 5 stars  

My daughter has OTC...I suspected it when she was about 7 months of age when I started introducing solid foods to her and she was becoming failure to thrive. I have lost 2 sons to OTC so was very aware of the danger that could lie ahead of us. The thought of having to bury another child was heartbreaking. I was having a hard time finding a Dr who could help me with "Elle". After searching the internet I came across the NUCDF. I was amazed at all the information they had on UCD's. I filled out a contact information on their website and Im not kidding..it wasnt 5 minutes later I received a phone call from Cindy Le Mons...what an Angel!!! She gave me so much information and then came the most awesome question from her.."Are you happy with your Dr"..I replied NO. She then directed me to a Dr. who has been a Godsend! My daughte did a complete turnaround...he and his dietician helped us get Elle stable. I later started displaying symptoms of adult onset OTC, called Cindy about it and she encouraged me to get started on medication too. I feel so much better too. I can call her anytime and she is always there for us. She lets us know all the important information that we need to know concerning our meds, recalls, drug interactions...anything to do with our illness she is there...for the NUCDF is all about finding a cure and keeping us alive..that is their goal! Cindy really loves us all and wants to help us..we can always count of her. She has given us the best Dr. who gives us his 100% to us as does she. I believe in my heart we would not be alive today if it wasnt for Cindy Le Mons. We love you!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Interent

What, if any, change in your life has this group encouraged?

That we can live with a UCD

When was your last experience with this nonprofit?

2011

Role:  Client Served & Trying to organize a fundraiser.