Alan's DIPG medical journey!

$32,835 of $50,000 goal

Raised by 530 people in 23 months
Michel Ev Reyes
on behalf of Midy Vasquez
 YONKERS, NY
Hello friends and family as many of you may already know my 7year old nephew Alan (Midy and Ricardo's youngest child) was recently diagnosed with a rare brain tumor called DIPG. This is a highly aggressive and difficult to treat brain tumor found at the base of the brain. Diffuse intrinsic pontine gliomas . About 300 children in the U.S. get diagnosed yearly. Doctors give them a 0% survival rate. This type of tumor has very limited resources or even studies done for this matter. Our family is facing very difficult times and we need all the help we can get. While my sister and brother in law face tough decision making at this time. I decided to start this go fund me to get the ball rolling on possible monetary funds needed for clinical trials or anything medical that may surface along this journey.  So please help us anything counts and please pray for Alan and my family.   

                       Thank You!
            

From myself Michel/Evelyn and the entire family.



Hola amigos/amigas y familia como muchos saben Mi sobrino Alan de 7 anos  (el hijo mas joven de Midy y Ricardo) lo diagnosticaron con un tumor maligno en el cerebro llamado DIPG. Yo decidi empesar este go fund me para ayudar en el aspecto monitario que sera necesitado en este tiempo tan dificil. No hay muchos recursos o estudios en este tumor. Pero yo anticipo que Midy y Ricardo necesitaran ayuda para cualquier decision que tomen para Alan. Por favor ayudenos en lo que puedan. Todo vale hasta rezos. (perdonen no se escribir mucho en espanol)

                                                        Gracias!
De parte mia Evelyn/Michel y la familia entera.
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Update 2
Posted by Michel Ev Reyes
19 months ago
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Good morning friends! This is an update on how Alan is doing. Last Thursday he started complaining of very strong headaches. He had a really bad cold. Friday morning I took him to the ER at Nemours children's hospital where they only did a CT scan and nothing else. Dr Siller wanted them to do an MRI but they wouldn't. Alan started to feel better while in the ER and requested I take him to school because he knew his class was having fun participating in end of school year activities. So we were discharged and I took him to school around 11:30 am. About 2 to 3 hours later the school nurse called saying Alan was complaining of a really bad headache. I left work and picked him up. He was feeling a little bit better but about an hour later started to complain about a stiff neck as well. I sent Dr Siller the images of the CT scan. He wanted to rule out hydrocephalus which is accumulation of cerebral fluid in the brain which causes added pressure within the skull. Dr Siller wanted to make sure he did not need a shunt which would relieve the pressure within the skull.
Saturday his headache and neck pain came and went. When I told Dr Siller about the neck pain he was very concerned and told me to take him to see a neuro oncologist and request an MRI. We took him to Arnold Palmer and not only was he not seen by the neuro oncologist but over the phone without seeing Alan the on call neuro oncologist instructed the ER doctors to put him back on steroids. Alan had been off steroids for almost 2 weeks and we were very excited that he was going to start immunotherapy. We begged them to please let him get an MRI. It was not right blindly putting him on steroids without seeing what's going on inside his brain, but they refused saying his symptoms did not warrant an MRI. Dr Siller told me my hands were tied and I had no choice but to put him back on steroids. I was livid because I know they would not do the MRI because it hasn't been 6 months since his first one back in February and insurance would not cover it. But that's our healthcare system it's all about the money. They don't care about the people it's a business and it makes me furious . As a parent you feel so helpless. Alan has continued to complain about the headaches even after starting him on steroids again (a low dose). Today is Monday and Alan will travel to Monterrey tomorrow. He's doing ok this morning. I can't wait for him to go back to Monterrey he needs to be close to doctors that actually care. Please keep Alan in your prayers and that the MRI on Wednesday looks good just like the other ones. Please donate or at least share. If the doctor can get him off the steroids he may be able to get the immunotherapy which is very expensive. Thank you for your continued support and prayers without your generosity this very promising treatment would not be possible. (For PayPal information please contact us)
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Update 1
Posted by Michel Ev Reyes
21 months ago
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Update on Alan!

Since being diagnosed in February, the family has chosen an out of the country treatment for him. He is currently being treated in Monterey Nuevo León Mexico . He is having intra-arterial chemotherapy. After having just one treatment, a follow up MRI showed 50% shrinkage in tumor size (God is good)! Since then he had his second treatment and will have his follow up MRI and 3rd treatment at the end of April. Alan is in great spirits and we have noticed he is walking better and his eyes looks visibly better. We pray he continues to improve and we can continue to provide him with this very necessary treatment. The only problem we are concerned with is the cost of it. Each treatment cost approximately 8k or more and this does not include flights, stay, food or anything else. This cost is just his actual treatment. Also he is currently being weened off steroids that were initially prescribed. Once he is completely off of the steroids he will need to start immunotherapy which has a price of about 14k each and they anticipate he will need at least 3 sessions. Unfortunately since this treatment is only available out of the country there is no insurance coverage and everything is straight out of pocket. We thank everyone who has donated, these 2 first treatments would not have been possible without your support. We are humbled and deeply thankful forever. We will definitely need continued support and prayers. For pics and more frequent updates please follow #Alanstrong on Facebook.

Thank You!
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Read a Previous Update
Patricia Sanchez
22 months ago
3
3

Que Dios bendiga a Alan y le de mucha fortaleza a tu familia. Cuenten con las oraciones de la familia Haddock-Sánchez. Estamos a la orden.

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Ramonita Soriano
23 months ago
2
2

Lo siento mucho pero pa lante q dios ba a desapareser ese tumor fe q esta en mano de dios

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Louellen Lambertson
13 months ago

Although I don't know you I hope things go well...headaches are bad enough for adults....hopefully the doctor can get something to help....hope your young man feels better soon

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$32,835 of $50,000 goal

Raised by 530 people in 23 months
Created February 22, 2017
Michel Ev Reyes
on behalf of Midy Vasquez
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$600
Anonymous
12 months ago
$10
Morgan Main
13 months ago
ES
$5
Erik Salzenstein
13 months ago
$50
Megan Hartlove
13 months ago
EB
$200
Elizabeth Brown
13 months ago
BC
$250
Brady and Holly Corbridge
13 months ago
1
1

God Bless you all. I know this was a very difficult fight and I'm sure you all fought it bravely with Alan. Our son passed away six months ago after a 8 1/2 year fight with Ewings Sarcoma. We know. We are so sorry for your loss.

JR
$100
jean riley
14 months ago
1
1
$50
Anonymous
14 months ago
1
1
$20
Anonymous
14 months ago
1
1
EA
$25
Elizabeth Arnaud
14 months ago
2
2
Patricia Sanchez
22 months ago
3
3

Que Dios bendiga a Alan y le de mucha fortaleza a tu familia. Cuenten con las oraciones de la familia Haddock-Sánchez. Estamos a la orden.

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Ramonita Soriano
23 months ago
2
2

Lo siento mucho pero pa lante q dios ba a desapareser ese tumor fe q esta en mano de dios

+ Read More
Louellen Lambertson
13 months ago

Although I don't know you I hope things go well...headaches are bad enough for adults....hopefully the doctor can get something to help....hope your young man feels better soon

+ Read More
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