On December 8th, Nico Gonzalez woke up from his afternoon nap and complained about pain in his neck and feet. The next week in school, Nico's teachers noticed he was having difficulty walking and using his hands after naptime. Looking for answers, Nico and his family went to Kapiolani Medical Center on December 13th where he received an MRI and diagnosis of Chiari Malformation Type I. Chiari malformation happens when a part of the cerebellum extends below the base of the skull into the upper spinal canal. While not uncommon, it is typically undiagnosed until adolescence or adulthood, when symptoms develop (usually due to injury or illness). If left untreated, this condition can lead to permanent nerve damage and paralysis. Here in Hawaii, Nico is the first patient with chiari malformation within his pediatric practice.
In Nico's case, the malformation has led to development of syringomyelia, which is blocking the typical flow of cerebrospinal fluid. Nico will need a procedure called posterior fossa decompression surgery, which will remove the bone at the back of his skull and spine, allowing for decompression of the cerebrospinal fluid.
Nico and his family have elected to do the surgery with Dr. Gerald Grant , a pediatric neurosurgeon at Stanford University Medical Center . They have chosen Dr. Grant for many reasons including his extensive experience (Dr. Grant does about 100 operations a year, with 30% on children under 5 years old), low rate of additional surgery (only about 2% of his patients need an additional operation), and his ability to make Nico and his family feel at ease about the surgery and answering many questions along the way.
Nico will have neurosurgery on February 7, 2018, a month before he turns 3 years old.
The funds from this campaign will be used to support Nico and his family with travel (they leave for Stanford on February 2nd), accommodations (the hotel near Stanford is about $250 per night but they are currently on the waitlist for the Ronald McDonald House ), health insurance deductibles (Nico's medical insurance will not cover car/hotel accommodations), daily living expenses (Nico's mother, Sunny , has been home with him since December), and follow-up care (unfortunately, the pediatric neurosurgeons in Hawaii do not do follow-up care for surgeries performed outside of their practice).
Nico, Sunny (mother), Pablo (father), Naomi (sister), and Mimi Amy will be in Palo Alto for almost one month. After surgery, Nico will be kept out of school for 6-8 weeks and may require physical therapy, occupational therapy, and speech therapy.
The last thing Nico's family should worry about is finances. Please consider making a contribution to support their journey to Nico's recovery.
Here is a quick note from Nico's mother, Sunny:
Through it all, we know that Nico is in the palm of God’s hand. His name Nicolas Ezekiel Yasuhiro - while super long (and he’s not going to like me when he buys his first home) has so much meaning for us. He was named after his late Abuelo, who was a man of strength and determination and his 91 year old great grandmother, who still tries to carry all 36 pounds of him. The meaning of his name is victorious, strengthened by God, with abundant peace. We know that he was perfectly named for this mountain that he will face and overcome.
We believe by faith that God will see Nico through this and he will come out victoriously. He is our warrior and while we joke that this is going to just be a cool part of his ESPN highlight reel when he becomes a soccer (or baseball) star, we do know that this is just a part of God’s testimony for Nico.
We just wanted to take the time to say thank you. We are so grateful for you and we have been blessed beyond measure by all of the love we have received. We know that this will be a journey and we couldn’t do it without all of you. We love you all so very much. Thank you for loving our son with us. It means more than any words could ever express.
The Gonzalez Family
- mie takeda
- Lynn Adachi
- Penny Kaniho
- DeAnna Rhodes
- Derrick Mamiya
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