My daughter Kaylin was born in late 2008.  From the day she was born, I knew something was different.  Only two days after birth, she became constipated. As an infant, she had frequent urinary tract infections. She was even hospitalized and put on IV antibiotics, but still no one knew why. Our local doctor kept giving us laxatives.  When I finally said that enough is enough, and asked to see a specialist, the doctor initially told me that there wasn’t anything serious to be concerned about.  It took 16 months of trying to get doctors to listen to me that I finally got a referral to a specialist.

Finally, in August of 2010, we received the referral for a specialist. We saw a gastroenterologist. She took one look at Kaylin’s bottom and knew exactly what the issue was, then scheduled an MRI. The MRI confirmed that Kaylin had sacral agenisis/caudal regression syndrome.  Part of her sacrum is missing. Her sacrum ends at s2. She also has scoliosis, left convex centered at L3 and kyphosis of the thoracic spine

Kaylin’s condition can’t really be seen on the outside just by looking at her, but that doesn’t mean she does not have many challenges. I know that she endures pain on a daily basis, and she has had 14 surgeries in her short life, including a mitroffanoff and an ACE in situ to help with bladder and bowel management.  To help Kaylin cope with all of this, she sees a psychologist. Sometimes it seems that her life revolves around her medical condition because she can get tired and is also prone to throat infections and sleep problems.

Despite these challenges, Kaylin does extremely well at school and has lots of lovely friends. Considering what she misses in school due to medical issues, she is so bright that she catches up quickly! She is so very loving and tries her best to smile all day. Kaylin actually loves going to hospital as she had a wonderful relationship with all her nurses and doctors. She is unbelievably brave and just gets on with everything that life has thrown at her. I’m so proud of her.