Welcome to the Team Tufts page!  Our sweet son Johnathan was diagnosed with Chiari malformation in May of 2010 at the age of 2.  We were very fortunate that they were able to find the malformation on the CT scan from an unrelated fall.  After much research and thanks to the advice of our dear friends the Swihart family, we decided to take Johnathan to the Chiari Institute in NY for a full evaluation.  At this point Johnathan was not very symptomatic so we all agreed the best approach was just to watch and wait.

In the early spring of 2011 everything started to change.  We were noticing more “behavioral” issues with Johnathan and it took us a long time to realize these issues were due to the fact he was having increasing headaches.  Johnathan was speech delayed and the only way he was able to convey he was in pain was by these behavioral changes.  As the spring and summer passed, Johnathan kept getting worse and by fall his quality of life had been greatly affected.  He couldn’t play for any length of time without it being too much for him to handle, he had an extreme sensitivity to noise, and he was in constant and increasing pain.  After consulting again with Dr. Bolognese we made the very difficult decision to move forward with surgery (posterior fossa decompression).  Johnathan was decompressed on October 13, 2011 and had tethered cord surgery 5 days later, both in New York.

Johnathan is now a happy 6 year old kid who is thriving in Kindergarten and all around doing really well.  This is something we do not take for granted as there is no cure for Chiari.  The goal of surgery is to hopefully help alleviate some of the symptoms but this is a condition he will always have to live and cope with.

Thank you everyone for your generous support of the past two walks.  The money raised goes to much needed research for these debilitating disorders, as well as continuing our mission of support and education.  We truly appreciate your help, support and especially your prayers for our family and for our Chiari community.

Bryan, Cathy, Johnathan and Nathan

Participants

• Amanda Perches
• Sugarland
• Maria A Fondon
• Eric J Berning
• Annie Chapman
• Johnathan Tufts - Team Captain

• Goal $5,000.00
• Raised $2,040.00