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

Rating: 5 stars  

We celebrated our daughter Cora’s 9th birthday recently and couldn’t help but reflect upon how fortunate she has been. For her, it was not an easy start in life. She came to us as a foster child, along with her two brothers, unsettled and afraid. They were used to being moved from place to place. We soon learned that 4-year old Cora was used to being sick all of the time too. Her behavior was erratic, and she was vomiting daily. Her tantrums were so frightening that we questioned whether we could commit to becoming her adoptive parents. Social Services informed us that they would take all three kids from us if we couldn’t handle caring for Cora. We asked ourselves, “If not us, then who?”
Cora became progressively sicker. She was uncontrollable and inconsolable. When we looked into her sad eyes, they seemed to be full of questions, and we had no answers. Feeling helpless, we rushed her to the local hospital. Before long, she was transported to Children’s National Medical Center in Washington, DC, slipping into a coma and clinging to life. Within less than 24 hours, she was saved by a team led by Dr. Uta-Lichter Konecki and cared for by the most knowledgeable, compassionate medical professionals we had ever met.
Cora had been suffering from hyperammonemia, described to us as a dangerously high level of ammonia in the blood, which is toxic to the body. The condition was caused by a defect in her metabolism known as “OTC” (an acronym for Ornithine transcarbamylse deficiency). OTC is a urea cycle disorder (“UCD”) that, if left untreated, could lead to brain damage or even death. We were told that Cora should be monitored closely on a daily basis, follow a strict low protein diet, and take several medications, as well as supplements.
We were overwhelmed with the awesome responsibility we had to accept in order to keep Cora alive and healthy. Throughout the weeks, then months and years that followed, however, we came to realize that caring for Cora, and others afflicted with UCDs, is a team effort that goes well beyond the walls of our home and the hospitals. Through Children’s National Medical Center, we were introduced to the National Urea Cycle Disorders Foundation (“NUCDF”) and UCD families. Cindy Le Mons is the Executive Director of NUCDF and truly a team leader.
UCD families are faced with many obstacles, and the learning curve is steep. We found ourselves in the precarious position of having to educate others, when we understood so little. Since Cora was still in foster care, we had practically no control over the management of her care. We had to persuade Social Services that she is medically fragile. Despite providing them with proof of Cora’s illness and immediate needs, my employer would not extend my leave, and I was forced to quit my job. Without my income, we had to research funding and programs for which Cora could qualify. When she began having behavioral and learning problems, we had to address those, as well as the diet restrictions and difficulties with administering medications that were unfamiliar to our family and friends, Cora’s pediatricians, and the school.
There were other challenges, and as we prepared to face each one, Cindy Le Mons and NUCDF provided us with a wealth of information and guidance. When we were uncertain, confused or frightened, they were just a phone call or e-mail away. We’ll be forever grateful for each and every answer, shared resource, returned phone call and e-mail, as well as the networking opportunities NUCDF has made possible for us to connect with others in the UCD community.
At our first NUCDF conference, our family unexpectedly shared a table at breakfast with two doctors who were visiting from different countries. They were there to teach and to learn. This time, we were answering the experts' questions since obviously Cora was healthy and happy. At one of the roundtable sessions, we witnessed some of Cora’s doctors and their colleagues sharing their knowledge with others who travelled from around the globe. And we found ourselves sharing our experiences freely and openly throughout the weekend, just as the other attendees did. It was a very emotional experience. At one point, a doctor pulled us aside and thanked us for being there and giving others hope. We had never looked it that way because we were too busy being thankful of others. But, the comment left us with a wonderful feeling that we were making a contribution. It was then that we realized that our family is an integral part of NUCDF’s team effort to save lives, which clearly stretches far and wide.
When we look into Cora’s eyes today, we see beauty and lots of promise, thanks in large part to NUCDF. Just this month, she was promoted to the 4th grade; happily celebrated “bridging over” from Brownie to Junior with her Girl Scout friends; and took 1st place in the first swim meet of the season – in all four races she competed in! Her brothers were teasing her afterwards: “You can’t say you never win anymore, Cora!” Indeed, she can’t.

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