We live in Monterrey, Mexico, which is only 250 miles south of San Antonio, Texas. Our first born, a boy, died 1 week after he was born in 1979. He wasn’t fed from his mother and he suddenly collapsed without much opportunity to know what had happened. We now imagine that he probably had severe MSUD.
Our daughter Melina was born in 1980. At the age of 6 months she was noted to have developmental delays. Several doctors said the cause was a light cerebral accident which probably occurred at the time of her birth. We went to many places for second opinions, including Houston, Austin, and Mexico City, and Melina underwent many tests. Although she was tested for MSUD, this was done with a urine sample and was negative. Through the years her condition deteriorated badly. When Melina was 9, we knew she had classic MSUD and realized that the improper food she was taking caused her brain damage.
Meli & Oscar Valdes, with daughters Melissa, Daniela & Meli
After we knew about the MSUD, we got immediate assistance from several doctors at Hospital San Jose (part of the school of medicine from Monterrey Institute of Technology University). Our cases were probably the first in the State, but we had good support from the IUC pediatric director and neurologist director of that Hospital. They researched MSUD extensively, helped our daughters properly, and advised us about MSUD and the strict treatment we must care about.
The girls were medically followed very closely for the first 10 years. Before they were 6 years old, Melina had 2 very serious crises and Daniela only one. As they grew older (10+) they have been fairly well and without a crisis. In regards to the diet, we attended the Nutritional Clinic of the medical school from the local State University (UANL). They also were willing to help. They researched MSUD and assisted our daughters during the first 10 years. By now Daniela and our selves have had a lot of practice managing the diet, but we are still very careful about portion sizes and of course the low protein foods. Daniela and Melina have Ketonex 2 complement formula every day, which we get directly from Abbot Laboratories located in Mexico City.
Today we know that the UANL Nutritional Clinic is helping 3 other kids with MSUD (5 to 10 years old). The IMSS (public health system) provided our information to their parents and we are sharing with them all we know.
As you can see in the picture, Melina, now 28 years of age, is a very nice but quiet girl. She is always happy and she smiles most of the time to communicate what she needs and wishes, but we must assist her with everything. Sadly, her condition is getting worst every year, and we are now fighting against secondary but terrible problems like epileptic crisis and the most dangerous one, pneumonia due her immobility and spinal scoliosis. We know every year is going to be worse for her and we are doing as much as we can without affecting Melina dramatically.
Daniela, now 20, finished high school last year and is studying to be a kindergarten teaching assistant. Daniela even is assisting my wife’s sister kindergarten school and may work there eventually. She loves little kids and she is a very lovely and very happy young girl, caring about her friends, always willing to help and keeping herself healthy dancing and cycling.
Daniela cares a lot for her diet and she is growing almost normally: Daniela surprises us how well she manages her food and diet while at home, school, restaurants, outdoors,… she always carries emergency low protein food bars and candies in her personal bag, just in case. She is not good in mathematics and has difficulty with fine motor skills, but she reads and speaks very well Spanish and understands some English, enough to communicate. Eventually she will be practicing fluent. So we know she is able to manage 2 languages. Throughout the years she has needed some “growing” assistance but her sister Melissa, 24, helps Daniela a lot. Melissa does not have MSUD. Unfortunately she has optic nerve coloboma in both eyes. But she is so smart. She just graduated from college with the highest honors, she is fully bilingual English-Spanish and now works for me as a SAP certified consultant in my company. Eventually we are planning to start a family business together where Daniela can work productively and independently, and be self motivated.
Meli (my wife) and I do not have cases like these in our respective families; however at the end we are all together a very happy “normal” family, challenging MSUD. We always dream of helping our daughters soon, and were thankful to find the MSUD support group web site 6 years ago. It is our main source regarding this important issue. The impact of this organization, especially when we parents urgently need simple but key information, is extremely valuable. You may not imagine how good it is for many families like ours when it is needed, and how grateful we are. No matter we do not live in the US, we are just one mouse click away. We hope to meet some of you soon and to learn from you. Maybe Chicago is the time.
Meli and Oscar Parents to Melina (28) and Daniela (20)
Classic MSUD Monterrey, Mexico