As a grandmother, it is humbling having to write/create this page for our youngest grandchild. Castalia Marie Chafatelli, aka: Tilly, Tilly Turtle, TT, Tiny, she has been dealing with multiple digestive disorders for the last 7 months. Her little body has issues processing and digesting food and eliminating waste, which leads to blockages throughout the digestive tract. Reoccurring blockages have led to numerous hospitalizations, procedures, surgeries and biopsies in an effort to treat Tilly’s condition. Her sweet disposition and strength in enduring these repeated procedures has won over her gastrointestinal specialist. He has been a great advocate for Tilly, Caitlin and TJ as they navigate unprecedented times. To date, Tilly’s care and treatment have been done at Duke and Novant in Wilmington. However, she needs to be under the care of more specialized pediatric gastrointestinal doctors. This week she will make her second trip to Levine Children’s Hospital in Charlotte for a medicated bowel clean out, colonoscopy and endoscopy, anal rectal and colorectal manometry testing, bowel management, and possible anal Botox. At the end of her stay she will have her surgical consult for her cecostomy, and prolapse repair with scar tissue removal. Hopefully her big surgery and inpatient recovery will be scheduled in the next few weeks.

Diagnosis: TT had multiple GI issues making effective treatment and definitive diagnosis tricky. At this time doctors are aware of her having a motility disorder of her ascending colon, output dysfunction of the rectum, anal prolapse with inhibiting scar tissue, and defective bowel tissue.

There are many expenses incurred each week caring for Tilly’s condition, Medication, medical and incontinence supplies, nutritional supplements, in addition to travel expenses to long hospital stays, doctor appointments 1-5 hours away. TJ would like to be at Tilly’s upcoming hospitalizations and surgeries. In the past he has often been unable to miss work to be with his family because of financial responsibilities. The family would love to be together as they take on the next steps in Tilly’s treatment.

Tilly is the youngest of 3 children, Tilly has two older siblings Nash (5) and Aurora (4). They desperately want their baby sister to get better so they no longer have to see her struggle and in pain. Having their Silly Tilly home is all they care about.

Any and all assistance is greatly appreciated for this precious family. It is our hope that this upcoming hospital stay will lead to answers and relief for our Tilly. We are hopeful for her future in adapting to her medical condition.