Devin Needs Your Help!!!
Last week my family received the most devastating news anyone could ever hear. My nephew Devin, age 6, was diagnosed with an inoperable brain tumor and was given a life expectancy of 8 months to 2 years.
Doctors have explained that the tumor, known as Diffuse Intrinsic Pontine Glioma (DIPG), is a very rare and aggressive form of cancer typically found in children ages 5-9. Only 200-300 children in the United States each year are diagnosed with DIPG as they struggle to find a cure. This type of tumor is located at the base of the brain and the top of the spine. Over time, it will impact all of little Devin's essential bodily functions: heartbeat, breathing, swallowing, eyesight and balance.
As I'm sure you can imagine my brother James, sister in law Christine and our families are deeply shattered by this news. James and Christine met one of the first days of freshman year in college and have been together ever since. Their dream of having a big family came true with 4 beautiful boys, all 12 and under; Colin, Owen, Brenden and Devin. Their lives are devoted to these kids and the family.
Doctors at Boston Children’s Hospital have informed us that radiation treatments are the best we can do to keep Devin comfortable for his remaining time. As we struggle to pick our heads up and grasp what we are being told we just simply cannot allow this to happen without a fight. We have been calling doctors, sending scans and turning to clinical trials to see if any breakthrough treatments exist.
With all of these efforts comes a financial burden that no family should have to worry about while desperately trying to save the life of their child.
Devin is the youngest of James and Christine’s boys and the youngest of 8 cousins, but you wouldn’t know it! Devin has spunk and a fun personality. He likes to dance and make funny faces. In fact, it’s hard to find one picture where he isn’t making silly faces. He wants to be noticed and will make himself known. Some of my favorite times with him are from reading him books and answering the questions that followed. He loves his grandparents and being with the family.
This past Christmas the cousins were all playing heads up and he was right in there doing his best. He is not afraid to speak up and holds his own with his big brothers. He will jump on you, wrestle you, and hug you when you least expect it. The brothers enjoy each other and spend the majority of their time together and supporting each other on the sidelines of their sporting events.
His cousins adore him too. Each year we all vacation together and the cousins spend their days swimming, hiking and their nights playing hide and seek, board games, watching movies and roasting marshmallows. Not having Devin there is a thought we just can't bear to think about.
Losing Devin would have a profound effect, not only on his older brothers, but also on his cousins who will each be left with the plaguing question WHY???? This is so difficult for us as adults how can all these kids come to terms with this.
Please help James and Christine and please pray for my family and help us in any way that you can. All donations are appreciated and will help us do whatever needs to be done to give Devin a fighting chance in the limited time we have.
Thank you from the bottom of my heart.
just an update on Devin: On Friday Devin had a biopsy at Boston Children's hospital. Doctors were able to get 4 samples of tissue. This was a very dangerous but critical first step in identifying which clinical trial he is eligible for. All options are being considered, even overseas. He is doing well and has a big appetite. In fact, he's recently been craving hamburgers. I'm so proud of my nephew for be so brave and strong He is a fighter.
I truly believe that all the comments of love and support gave James and Christine the strength to pick their heads up and fight!!! My family can't thank you enough. All the love and support from everyone has been so heartwarming- it's brought us to tears over and over.
Just to give an update: Devin will be in the hospital this weekend having a biopsy. Doctors feel that this will give more answers and guide James and Christine toward a clinical trial that is best for him. As for today, James and Christine are enjoying their family in the Patriots parade and riding the duck boat with Tom Brady!!! Thanks to a friend who was able to set this up for them. #whynotdevin #devinsarmy
My little Grandson Ronan has dipg, so my heart goes out to every parent that has to deal with this terrible news. Ronans parents received the news on the 23rd April 2015. In London they are doing CED trials(Harley St) and it would seem that the earlier you contact them the better chance of getting on the trial, (I do think the same trials are in the US and Mexico,) god bless you all, what ever way you go.
My son also had an aggressive /rare type of brain tumor when he was 6 yrs old. My son is now 12. It was a different type than your sons but they didn't know how to treat him. He was at Boston Children's and being treated by Dana Farber who consulted with Brigham and women's and Mgh (who did his radiation). It took them all to decide a treatment plan. My prayers will be with you. I know first hand how difficult this is for you and your whole family. Do your best to find someone who can relate to talk to. Honestly it helps a lot. It's easier than the sad "I can't image", "my kid had a bad flu once, so I can imagine. " Everyone means well but it helps to have some truly understand. God bless. Miracles can happen.
My wife's cousin passed on due to DIPG. His parents set up a foundation to help families like yourself. Reach out! Cory's Crusaders Teresa Gaudet You can find it as a Facebook page and get in touch with Teresa! I wish you and your family the best of luck! I will pray for you!
I am sorry to hear about Devin's diagnosis. I lost my 9yr old daughter to DIPG. My wife and I run the MA chapter of The Cure Starts Now - a charity run by DIPG parents and fully dedicated to finding better treatments for DIPG. As you know, DIPG is very different than other brain tumors and other childhood cancers. It has been neglected for too long and we are changing that. In May we will host a symposium bringing together the world's best DIPG researchers to present their latest findings and trials. If you or anyone in the family would like to speak with me, please reach out via FB (cure starts now Massachusetts page) or the CSN website where you can find my email/phone info on MA chapter page.
Please watch this you tube video regarding cannabis oil. I highly recommend you watch "medical marijuana miracle cure part 2 & 3" It explains all. It is safe for children and does not cause a psychoactive effect. Because it does not contain any THC is it legal in this country and no prescription is needed. It has helped so many beat cancer. Keep an open mind, watch the this video and then look up the other video's I mentioned hopefully you can find them on you tube. They originally aired on AWE. https://www.youtube.com/watch?v=TB8mHcuSFek
Please research Dr. Burzynski.... He has an incredible track record of not only treating, but CURING cancer. There are Youtube documentaries on this doctor that share the success rate that he's had. He was endlessly dogged by big pharma and other institutions that stand to lose a lot of money if cancer is cured. There is so much on the line with your son & we pray for your family to be given God's wisdom as you make so many critical decisions right now. It's difficult to wrap your arms around the options that are out there, as there is so much to read & come up to speed on in a very short period of time. It looks like you have a large extended family. Perhaps you can designate somebody or multiple people to help with researching your options, as that would be really helpful. As parents, you are the very best advocates for your children. I think the story behind Lorenzo's Oil and how it came about is fascinating. One parent who read and researched so many options for their child had an incredible impact on so many other families. Read everything that you can find & be open to what you learn. We are praying for God to open & shut doors in directing your family through this journey. We are also praying for His mighty healing hand to be upon your precious son. God Bless and keep your family in His loving care.