Pen Pals

Any kids out there interested in talking with other MSUD kids?
A new on-line group has been formed.

Sign on, introduce yourself, compare experiences, and talk about whatever is on your mind.

The address is: This email address is being protected from spambots. You need JavaScript enabled to view it..
When my son Marlon was born four years ago and diagnosed with MSUD, I felt alone. He was the only person in the state of Alaska diagnosed with this metabolic disease. I was recommended to join the MSUD support group, and thanks to this group I learned very valuable information about this disease from the parents and guardians of children suffering from MSUD. I cannot imagine our lives in these last four years without the support of all of the wonderful families that participate in this group. They became our second family.

Later on messages were posted in this group. There were families from Spanish speaking countries that were hoping to find some support and help. The language was in many cases an impediment. Being born and raised in Spain, I felt for those in my country and other parts of the Spanish speaking world who had no way to communicate with other families that were living with MSUD. One day I thought I could form a Spanish MSUD chat group. The MSUD support group agreed to post my name and information on their website. I now receive phone calls and e-messages from countries such as Spain, Mexico, Honduras, Argentina, Peru and Chile. Some of these families are very desperate to obtain some help, and others just seek to meet someone that would share their situation. I feel great joy whenever I can help these families to connect with those of us living similar situations. Several families from Spain and South America have now joined.

If you would like to join the Spanish MSUD chat group, please send an e-mail to the following address: This email address is being protected from spambots. You need JavaScript enabled to view it.

Grupo de charla sobre MSUD en español

Cuando mi hijo Marlon nació hace cuatro años y le diagnosticaron con MSUD me sentí muy sola. El era el único en todo el estado de Alaska diagnosticado con esta enfermedad metabólica. Me recomendaron unirme al grupo de apoyo de MSUD, y gracias a éste, logré información increíblemente valiosa sobre esta enfermedad, la cual venía directamente de padres de niños y adolescentes que sufrían la misma enfermedad. No puedo ni siquiera imaginarme nuestra vida en estos últimos cuatro años sin el apoyo de todas las maravillosas familias que participan en este grupo. Llegaron a ser nuestra segunda familia.

Al cabo de algún tiempo llegaron mensajes al grupo. Estos venían de familias de países hispanohablantes que tenían la esperanza de encontrar apoyo y ayuda. Frecuentemente el idioma se convertía en un impedimento. Al haber nacido y sido criada en España, me consternaba el saber que había familias con necesidad de apoyo en mi lugar de origen y otros países, quienes no tenían forma de comunicarse con otras familias que estuviesen viviendo con MSUD. Fue entonces cuando se me ocurrió la idea de formar un grupo de charla sobre MSUD en español. El grupo de apoyo de MSUD en los Estados Unidos aceptó a anunciar mi nombre e información en su página web. Hoy en día recibo llamadas telefónicas y mensajes electrónicos de países como España, México, Honduras, Argentina, Perú , Chile, etc. Algunas de estas familias se encontraban en situaciones desesperadas para obtener algún tipo de ayuda relativa a esta enfermedad. Otras, sin embargo sólo deseaban conocer a alguien más viviendo su misma situación. Varias familias de España, México y América del Sur, forman ahora el grupo de charla sobre MSUD en español.

Si desea unirse al grupo de charla sobre MSUD en español, por favor envíe un e-mail a la siguiente dirección:
This email address is being protected from spambots. You need JavaScript enabled to view it.

Mónica Falconer
Anchorage, Alaska

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A Child's Life

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