Support Lex's Journey to Health and Happiness

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We have opened this GoFundMe to try to help with our grandson’s medical expenses. Our grandson, Lex, started displaying strange medical symptoms early in life, but it was difficult to diagnose him with anything when his symptoms did not add up to a single cause. While Lex and his parents were living overseas, they saw multiple doctors at different hospitals to try to diagnose and treat him. Lex was diagnosed with a rare genetic condition known as Chronic Granulomatous Disease, or CGD in early 2024 after a genetic test was done.

Since then, it has been a long road of prophylactic treatment in preparation for his Bone Marrow Transplant, which is the only known way to cure CGD at this time. During this process he has undergone multiple procedures and we are happy to say that he received his transplant in December 2024 after a week of intense chemotherapy to prepare him for his new donor cells. While we are thrilled that he has received his cells, there is still a long way to go.

The road to recovery comes with more expenses to make sure the transplant is successful such as medications and many clinical visits. Lex had his Bell Ringing ceremony the first day of the New Year, but after a week of being out of the hospital, we had to return and find ourselves admitted once again. As we said, the road to recovery is long, but we are staying optimistic and doing everything in our power to keep him happy and healthy with the help of his BMT team.

The donations received through the GoFundMe would help with paying for medications, copays after insurance, and unexpected expenses related to treatment.

We are grateful for any help that can be offered during this time. Thanks once again and God Bless.

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Hemos abierto este GoFundMe para intentar ayudar con los gastos médicos de nuestro nieto. Nuestro nieto, Lex, comenzó a mostrar síntomas médicos extraños a temprana edad, pero era difícil diagnosticarlo cuando sus síntomas no se relacionaban con una sola causa. Mientras Lex y sus padres vivían en el extranjero, vieron a varios médicos en diferentes hospitales para intentar diagnosticarlo y tratarlo. A Lex le diagnosticaron una enfermedad genética rara conocida como enfermedad granulomatosa crónica o EGC a principios de 2024 después de que se le realizó una prueba genética.

Desde entonces, ha sido un largo camino de tratamiento profiláctico en preparación para su trasplante de médula ósea, que es la única forma conocida de curar la EGC en este momento. Durante este proceso, se ha sometido a múltiples procedimientos y nos complace decir que recibió su trasplante en diciembre de 2024 después de una semana de quimioterapia intensa para prepararlo para sus nuevas células de donante. Si bien estamos encantados de que haya recibido sus células, todavía queda un largo camino por recorrer.

El camino hacia la recuperación conlleva más gastos para garantizar que el trasplante sea exitoso, como medicamentos y muchas visitas clínicas. Lex tuvo su ceremonia de campanas el primer día del Año Nuevo, pero después de una semana de estar fuera del hospital, tuvimos que regresar y nos encontramos internados una vez más. Como dijimos, el camino hacia la recuperación es largo, pero nos mantenemos optimistas y hacemos todo lo posible para mantenerlo feliz y saludable con la ayuda de su equipo de trasplante de médula ósea.

Las donaciones recibidas a través de GoFundMe ayudarían a pagar los medicamentos, los copagos después del seguro y los gastos inesperados relacionados con el tratamiento.

Estamos agradecidos por cualquier ayuda que se pueda ofrecer durante este tiempo. Dios los bendiga a todos.
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    Organizer and beneficiary

    Rachel Valle
    Organizer
    Colorado Springs, CO
    Jesse Valles
    Beneficiary

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