Our son Tristan was a happy, healthy baby. One day, his daycare teacher noticed a lump on his back and told us she was concerned. After thoroughly inspecting his back, we noticed that his spine looked a bit curved. Immediately we took him to his pediatrician who then referred us to CHOP Orthopedics. At just 5 months old, Tristan was diagnosed with Progressive Infantile Scoliosis. As a family, we were faced with many tough decisions right from the start, but through the help of Dr. Cahill and his nursing navigator Susanne Manzoni we decided to move forward with the only treatment that could potentially cure him. Tristan underwent anesthesia five times before the age of one to get casts applied around his torso. Every six weeks his cast was removed and a new one was placed on him, over the course of nine months. He was then transitioned out of the cast to a brace that he wore for 23 hours a day over the next year. The journey was difficult for Tristan but we are now excited to share that Tristan has a straight spine!
Tristan still has a long road ahead of him to maintain a straight spine, but we could not be more thankful for everything that CHOP and Dr. Cahill have done for him! When people hear about scoliosis, many think of adolescent scoliosis which is a very different condition than infantile.It is so important to raise awareness for this disease because if it is detected early (usually before the age of 18 months) it can be treated and potentially cured with Mehta growth guided casting alone. This casting prevented Tristan from having to undergo lifelong painful surgeries to correct his spine.
As parents of a child with early onset scoliosis, we decided we want to raise awareness for this condition. Our first event "Early Onset Scoliosis Day at the Phillies" was a huge success. Over 200 people attended and raised $8,000 toward EOS. 100% of the money donated went directly to Early Onset Scoliosis research at CHOP.
We are excited to announce a 2nd Annual Event which will take place on October 6th, 2018. The location of this event will be at “The Market at Del Val”, 2100 Lower State Road, Doylestown PA. The theme will be a Fall Festival where all scoli families and friends will be able to enjoy a night on the farm, including hay rides, corn mazes, hay bale runs, inflatables, bon fires, and more! Fun for all ages!!!
Please help spread the word!
#bentbutnotbroken #infantilescoliosisawareness #childrenshospitalofphiladelphia
Get The Word Out
https://chop.donordrive.com/campaign/scoliosis