Every day is a victory for Christian, who was diagnosed with XLA at age 3. Christian is now 6, and embraces life with resilience and hope! His treatment allows him to lead a full, joyful life—just like any other child. We hope you enjoy learning more about his story from our interview with his mother.
Please share a few sentences about your overall story living with PI.
El camino no ha sido fácil pero tampoco imposible, cada día es un día ganado para mi hijo, con su tratamiento ha podido llevar una vida plena y meramente normal como cualquier otro Niño, él lo ha tomado con naturalidad, él ha aceptado su condición como parte de su vida a pesar de tener sólo casi seis años..
The path has not been easy, but it has not been impossible either, every day is a day gained for my son, with his treatment he has been able to lead a full and merely normal life like any other child, he has taken it naturally, he has accepted his condition as part of his life despite being only almost six years old
How and when were you diagnosed? Which specific PI disease do you have?
Lo diagnosticaron a sus tres años después de una bacteria en el 2021, él tiene XLA (Agamaglobulinemia ligada al X).
He was diagnosed at three-year-old after a bacteria in 2021, he has XLA (X-linked Agamaglobulinemia).
How has treatment impacted your life? How did you decide this was the correct treatment for you?
El tratamiento ha sido de gran ayuda, aun que solo ha tenido dos enfermedades graves, el ha tenido muchos cambios positivos durante el proceso, supimos que el tratamiento era el adecuado por que es el unico que lo ayudara a llevar una vida normal para toda su vida, ha sido duro aceptarlo pero nos importa mas que el este bien.
The treatment has been of great help, although he has only had two serious illnesses, he has had many positive changes during the process, we knew that the treatment was appropriate because it is the only one that will help him lead a normal life for his entire life. life, it has been hard to accept him, but we care more that he is well
Do you share your story with others online? If so, tell us what made you decide to do so.
Si, de hecho mi hijo tiene su propia cuenta, en ella comparto su dia a dia, desde el comienzo hasta ahora, y todo lo hice al principio por que desconocia de esta patologia, en mi deseo de saber mas y conectar con mas personas como el, de hacer conciencia de que esto existe.
Yes, in fact my son has his own account, in it I share his day-to-day life, from the beginning until now, and I did everything at the beginning because I was unaware of this pathology, in my desire to know more and connect with more people like him, to make aware that this exists.
If there's anything else you'd like to share with us, please do so below.
El camino para nosotros no ha sido facil como familia, el acceso al medicamento que es costoso, a veces de muy dificil acceso, mi deseo es que se pudises conseguir de manera accesible ya que muchas personas dependen de ello, deseo una vida plena para personas como hijo
The path for us as a family has not been easy, access to medicine is expensive, sometimes very difficult to access, my wish is that it could be obtained in an accessible way since many people depend on it, I wish a full life for people with a son.