We'd be grateful if you gave us a moment to share our story with you.
Life can change in the blink on an eye, and that's what happened to us. When you least expect it, you find yourself at a hospital, getting the worst news of your life: Our small child, Emiliano, who is only two years and eigth months old, was diagnosed with a brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). Up to this point, this type of tumor cannot be removed; and no cure has been found given that no research protocol has been proved to be successful –although one might.
Like other children's with this disease, Emiliano is being treated with radiotherapy and traditional chemotherapy to wich has responded very well; and this are the words of our warrior-doctors- that Emiliano is a miracle. However, we know this treatment is merely a palliative care and this isn't going to help us to cure our son.
The picture is devastating, but it exist one opportunity in wich we have all our hopes. Our excellents doctors in Mexico inform us about a experimental protocol in Dana- Farber, Boston Children Hospital (BCH), is opening a new clinic protocol for DIPG in children. Considering Emiliano had been respond very well to his treatment is an excellent candidate for this protocol.
While thinking about this type of protocol with this kind of risks and uncertainty, it is so risky to take it as not to do it, the progress of this tumor is imminent, wich will cause our baby begin to affect his vital functions.
A few weeks ago we reacived an email from Dana-Farber BCH about the new clinc protocol for DIGP. We applied through their international department and Grand Rounds; we appreciated it, we enjoyed it, we pictured ourselves there... we felt it was ours, but we never imagined that money would become an obstacle for our goal, because these wonderful news have an entry ticket that costs one million dollars. One million dollars, which must be raised almost immediately, is keeping us apart from our goal –giving Emiliano the hope to live.
Please allow us to fulfill this dream, please let us come close to you to ask for help and support that might give hope to our child, who has so much to give to the world and whose life is just beginning. Please, open your heart so we can tell you Emiliano’s story. Maybe, since God is so great, he might have led us to the right person who might make this miracle possible.
With all our heart and gratitude for reading and understanding us,
Emiliano, Josué and Andrea
Miracles exist, and Emiliano is one of them.
We won't give up!
We must bet on this treatment. Yes, we are aware that no protocol has ever shown the results we dream of; but why shouldn´t we think that this one will? Why shouldn't we think that Emiliano will become that astronaut that walked on the moon for the first time?
Emiliano's clinical history:
Date of diagnosis: May 2020;
Diagnosis: Diffuse Intrinsic Pontine Glioma (DIPG);
Symptoms: Stridency, tachycardia, claudication, difficulty to deglute liquids, cephalic inclination towards the right side, left facial paralysis, reduction of flexion in the left ankle, disruptions in his walking.
Start of radiotherapy: May 13th, 2020;
Number of sessions: 30
End of sessions: June 29th, 2020;
Magnetic resonances: May 11th, 2020 to May 29th of the same year;
Next radiation: last week of August;
Current drugs: Temozolamide;
Next steps: Bevacizumab day 1 and 15 of the cycle; Temozolamide for 5 days every 28 days.