NOLAN, 14

Meet Nolan

Nolan was first diagnosed with Chiari at age 4.

He had 1st surgery, in his home state of Iowa, a week after he turned 9. Unfortunately that surgery did not help him.

Nolan's symptoms came back and that surgeon had major health issues, which led to a long journey of finding another neurosurgeon.

After searching long and hard, Nolan's mom, Angie, found Dr. Greenfield at Weill Cornell Medical Center.

Even though Nolan’s health was very complex and complicated, Dr. Greenfield was determined to help Nolan.

Together, Doctors Greenfield, Baaj, Schwartz, Anand and Otterburn performed over 15 hours of major and complex surgeries on Nolan in November 2015, ultimately saving his life.

They did a Chiari decompression revision, skull to spinal (O-C3) fusion, endoscopic trans nasal odontoid resection, dura scoring, laminectomy, hours of scar tissue repair, added a titanium mesh plate, and more!   

Nolan lost all of his life threatening or severe symptoms that were originally caused from ventral brain stem compression. He was doing very well.  

Recently, Nolan was involved in a very bad car accident - 

where someone ran a stop sign going about 35-40 mph, hitting Nolan’s front side of the car.

His wrist was broken and he was taken via ambulance to his local emergency room. The next day, Nolan began having very bad head pains, neurological symptoms returning, eyes not dilating, and loss of feeling in the limbs. 

Angie knew Nolan needed to be seen by Dr. Greenfield again to see what was going on with him. 

They consulted Nolan’s primary care doctor, his neurologist, his pediatric specialty clinic, their local emergency room doctors, and more in their home state, numerous times.

Despite numerous efforts, they were left with few answers to what may be wrong with Nolan or causing his symptoms, and most suggested Nolan needed to see his neurosurgeon for more answers.   

Nolan's family was going through substantial financial issues at that time and had no idea how they would travel the 1,000 miles again to have Nolan seen by his neurosurgeon, but they knew they really needed to.

That’s when they decided to reach out to DURAble Brains Foundation.

We were able to offer Angie and Nolan some assistance in staying in

and getting around New York City plus treat them to a yummy NYC family pizza dinner with one of our founders.                                                                         

Nolan & DBF

Here’s what Angie and Nolan had to say:

We reached out to DURAble Brains Foundation and they were a life saver for us! They helped with the hotel stay, food gift cards, an Uber gift card, and an awesome gift bag which was waiting for us at the hotel lobby. Nolan absolutely loved the gift bag which had an awesome card, some delicious mini cupcakes, some purple ribbon items for Chiari awareness <3, and the gift cards. 

Here is what Nolan would like to say: “I would like to thank everyone for helping in our trip to New York, from the hotel stay to the food gift cards to my fav places and the Uber Cash as well as the amazing mini-cupcakes. The cupcakes were mouth watering by the way. I really enjoyed the food and being able to see our Chiari family in New York City!” 

(Thanks to Baked by Melissa!)

Our trip did provide some answers for Nolan’s continued symptoms and issues. Due to Nolan having prior ventral brain stem compression, this car accident may have caused a sort-of concussion to his brain stem and cranial nerves, and although surgery may not be needed at this time, it may take quite some time for Nolan to heal. Dr. Greenfield and his staff at Weill Cornell Brain and Spine have never given up on trying to help Nolan throughout the years though, and they are continuing to help him now, even 3 years after his surgeries, to have the best life possible. We are forever grateful to them as well as DURAble Brains Foudation for always being there for us and trying to help.

 

Your kind donations are going to go to more families like Nolan and Angie's. We are so grateful for all of the support we have received to make stories like this happen! To help more families like Nolan's please visit our DONATE page.     

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