About Us

Caley was born March 22, 2007. Max and I were elated with our new bundle of joy! In the beginning weeks, our biggest complaint was that she slept too much. At six weeks, Caley had her first seizure. From that point, everything started to unravel. Two and a half long years later, in October 2009, Caley was diagnosed with CDKL5/Atypical Rett Syndrome.

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. There are fewer than 200 cases worldwide, however, more and more children are being diagnosed as awareness of CDKL5 spreads.
Most children affected by CDKL5 suffer from seizures, most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.

Caley, like most other CDKL5 children, is in a wheelchair (pink - of course) and cannot speak or use her hands purposefully. She is visually impaired and her daily seizures continue, despite multiple anti-seizure medications and a strict Ketogenic diet. Caley is one hundred percent dependent on us to get her through the day. 

Although Caley is very challenged with her development, she displays signs of progress thanks to the dedicated individuals that work with her. Caley is great at holding hands and giving hugs. Even though she does not speak,we understand her and enjoy getting to know her personality more and more. She loves music and her light box toys. Caley was gifted with a pacer/walker and now shows an interest in wanting to move her legs! She is not the most graceful walker and our walls are taking a beating, but its well worth it! 

Caley spends her days at school with a wonderful teacher and an aide, who help Caley navigate through her day. She is also involved in many therapies: physical, occupational, vision, music  and hippo therapy. 

Caley is the center of a huge supportive family and a big sister to her twin sisters, Avery & Mason. Our household has grown to include incredible nurses who care for Caley as if she were their own. In addition to family, she has been blessed with countless friends that cheer her on every step of the way! 

This journey has been very hard for all of us. We have now accepted and embraced our challenge. Caley is our gift. We are all better individuals from knowing her and loving her. We have learned how important the little things are and we celebrate the  gift of life everyday!

Contact Information:

Beth & Max Brown