And then, within days, he wasn't.
Seemingly out of nowhere, he experienced headaches and unrelenting tiredness which led to a trip to urgent care, a CT scan, an airlifted trip to Children's Hospital in Philadelphia, and devastating news in the form of a shocking diagnosis:
Benjamin has diffuse intrinsic pontine glioma (DIPG), an aggressive type of childhood cancerous tumor that forms in the brain stem.
DIPG is rare (only 300 US cases per year) and is incredibly difficult to treat given the tricky placement of the tumor.
At this point, his treatment options are limited and operating isn't an option.
The last two weeks have been nothing short of a nightmare but Benjamin has been and will continue to be a fighter! He and his twin sister (Olivia) conquered being born prematurely at 28 weeks weighing under 2 lbs each. They've been inseparable ever since.
HOW YOU CAN HELP
As he and his family battle this, they will need help and that's why we've launched this campaign.
If you can do ANY of the following things, it will make a huge difference during this difficult time:
1. Make a monetary donation.
2. Share this campaign on social media or by email with anyone and everyone you know who may be able to help.
3. Send Benjamin a card, visit him in person, make a video for him, keep him in your prayers, and send him messages of encouragement - he loves company!
All donations will be used to help cover medical expenses, travel and lodging during medical procedures, treatments and clinical trials, accommodations to bring Benjamin home, and necessary house improvements/updates to allow him to live comfortably outside the hospital.
NEXT STEPS FOR BENJAMIN
Benjamin has endured a marathon of surgeries and procedures in hopes of any short-term relief for managing pain, head swelling, and other symptoms from the aggressive tumor. Some were successful, and some were not. A shunt was put in to provide relief from the fluid pressure build up but may have caused him to lose control of his right side (arm and leg). Doctors are unsure what the root cause of this is, or how much functioning he will get back.
He will start radiation in Philadelphia within a week. Once a day, Monday thru Friday, he will receive radiation for six weeks straight.
If he responds positively, his symptoms should begin to lessen within one month. Benjamin's family is hoping and praying for a miracle. They are cherishing every second they experience with their happy and cheerful boy. The family hopes to share Benjamin's CHOP files with any reputable leading institution for clinical trial consideration in hopes of spending many more years together.
Benjamin's family is all in and will do whatever it takes to make their little boy better.
This campaign was created by Benjamin's aunt and uncle in hopes of making it as easy and comfortable for Benjamin and his family during this terribly difficult time.
Feel free to share questions, personal stories, and any/all relevant information that may help provide guidance during this difficult time.
Benjamin and his family thank you in advance for your support, love, and encouragement!
As his family would say during the difficulties he endured when he was born... JUST KEEP SWIMMING!
Benjamin & Olivia born at 28 weeks and under 2 lbs each!
Benjamin & Mommy
Benjamin & Daddy
Benjamin & Nouna
DonationsSee top donations
- George Fushi
- Brandy Brown
- Jennifer Chenoweth
- Marianne Gutshall
- Eftihia Neupauer
Fundraising team: Team Benjamin! Just Keep Swimming (3)
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