2018 Beneficiary

We are very pleased to announce that Cranberry residents Andrew and Samantha Duran and their 3 children Paisley (5), Juliette (3), and Maddox (4 months) have graciously accepted to be the Cranberry CUP's 2018 Inspirational Family.

Maddox Duran, aka SuperMad, was born with an open neural tube defect called Spina Bifida. His lesion was a myeloschisis, a form of the severest type of Spina Bifida (myelomingocele). This means that his nerves from L5 on his spine all the way down were completely exposed. At a little less than 24 hours old, he had a corrective surgery to close his lesion. At 5 weeks old, Maddox had a shunt placed on his brain to treat his hydrocephalus (excess fluid in the brain). He had many periods when he was with little to no oxygen, and periods when he stopped breathing completely. This resulted in him having a Chiari ii malformation decompression surgery at 7 weeks old. A Chiari ii malformation is when the back part of your brain -your cerebellum - is pulled down. They removed the backs of his C1 & C2 vertebrae and shaved some of his suboccipital bone (the back part of his skull) to relieve the pressure. This allowed him to breathe better. Hydrocephalus and the Chiari ii malformations are very common for people with Spina Bifida, but being symptomatic with the Chiari is not as common.

He also has dysgenesis of the Corpus Callosum (the part of the brain that connects the left and right halves is malformed) and Colpocephaly (enlargement of horns in the brains, the rarest of what he has) which can cause many problems, some of which we’re already seeing, but keeping the faith that they won’t be severe. Because he aspirates what he drinks and has severe reflux, he needed to have a Nissen and G Tube surgery at 8 weeks old. With his G Tube, he is able to safely eat.

Between all of his neurological disorders and his periods of oxygen deprivation, Maddox has Cortical Visual Impairment (CVI). This means that he wants to see, but his brain has trouble making the connections on how to see. Maddox has many therapies and doctor appointments, but everyone is working hard to ensure that he lives the best life possible and maximizes his potential. The Duran's ultimate goal is to spread awareness of these diagnoses, especially Spina Bifida, and to cheer SuperMad on!

The Cranberry CUP is looking to bring together the community to rally around this family. Let’s lift up their spirits and help them with their financial hardships during their time of need. Please keep baby Maddox in your prayers.

 

Special Thanks to all our sponsors