Support for Daniel Noguera

Dear Friends, family, readers…

Today my wife and I are seeking support, strength, and prayers for our 6-year old son Daniel Noguera. Daniel, who we also call Dani, was diagnosed with DIPG. DIPG stands for “Diffuse intrinsic pontine glioma.” It is a brain tumor that is highly aggressive and difficult to treat. It occurs in an area of the brainstem (the lowest, stem-like part of the brain) called the pons, which controls many of the body's most vital functions such as breathing, blood pressure, and heart rate. Because of its location in the brain and how rapidly it progresses, DIPG is a “high grade” malignant brain tumor. The survival rate for DIPG is 1% due to the fact that not much is known about DIPG since it’s difficult to study and treat because it can’t be surgically removed due to its location in the brain stem. Dani was given a 6 month to a year survival rate. Words cannot express how heartbroken our family is and has been since the moment we received this news.

Since Daniels Diagnosis in December thanks to the donations he was able to get 13 sessions of radiation which shrunk his tumor by 42%. However around 3 weeks ago Daniels oncologist decided to take him off of his steroids (which is why he has gained so much weight due to the steroids causing him to swell up) and within two days the symptoms he never had all of a sudden showed up. Daniel as of today July 8, 2022 has his entire body paralyzed. He can no longer walk, see through his right side or hear from it as well. He as well can no longer eat or speak right, or even breathe correctly. He has to get a feeding tube and possibly a tracheotomy. It only gets worse by the day. We have been told of a medicine that is able to shrink his tumor and cause him less pain and has shown great results. However it cost $450 per week and health care doesn’t cover it. In addition we were blessed enough to be able to get signed up for a trial in Miami called ONC201 for Daniels tumor and the trial is free but costs for gas, food, and housing over there during his trial is not payed for. We only have to go for one day every month. I have not been able to work that much since this began due to me wanting to spend every moment with Daniel especially right now as he needs it the most and not being mentally able to as well. 

The money would go towards the following:

-Daniels Medications

-Gas/ food / rent and housing for a day a month in Miami for Daniels medical trial 

This is really tough and hope none of you ever have to go through this. I would like to thank you for your thoughts and prayers and whether you are able to financially contribute or only able to share this page in an effort to reach more people, my family greatly appreciates it. Please feel free to reach out if you know of any resources available, or have experience with family members undergoing treatment in the Jacksonville area.

Queridos amigos, familia, lectores ...

Hoy mi esposa y yo buscamos apoyo, fortaleza y oraciones para nuestro hijo Daniel Noguera de 6 años. A Daniel, a quien también llamamos Dani, le diagnosticaron DIPG. DIPG significa "glioma pontino intrínseco difuso". Es un tumor cerebral muy agresivo y difícil de tratar. Ocurre en un área del tronco del encéfalo (la parte más baja del cerebro, similar a un tallo) llamada protuberancia, que controla muchas de las funciones más vitales del cuerpo, como la respiración, la presión arterial y la frecuencia cardíaca. Debido a su ubicación en el cerebro y la rapidez con que progresa, el DIPG es un tumor cerebral maligno de "alto grado". La tasa de supervivencia para DIPG es del 1% debido al hecho de que no se sabe mucho sobre DIPG, ya que es difícil de estudiar y tratar porque no se puede extirpar quirúrgicamente debido a su ubicación en el tronco encefálico. A mi Dani se le dio una tasa de supervivencia de 6 meses a un año. Las palabras no pueden expresar lo desconsolada que está mi familia y lo ha estado desde el momento en que recibimos esta noticia.

Ante todo, nos gustaría agradecerle por sus pensamientos y oraciones, ya que serán muy apreciados. Ya sea que pueda contribuir financieramente o solo pueda compartir esta página en un esfuerzo por llegar a más personas, mi familia lo aprecia mucho. No dude en comunicarse si conoce algún recurso disponible o si tiene experiencia con miembros de la familia que se someten a tratamiento en el área de Jacksonville.