When Titus was born to Bekah and Danny Bowman, he seemed the perfect baby. He grew to be a busy, loud, playful, happy, loving toddler. Then, something changed. He stopped gaining new skills and he started having seizures. Bekah and Danny took him to numerous doctors to find out what was causing the seizures. Titus was diagnosed with epilepsy.
They thought it was as bad as it could get for their young boy, but they were wrong. The seizures continued to increase in frequency and magnitude. Titus was hospitalized for a week at a time to get the seizures that were wreaking havoc on his young brain and body under control. A year later, the true severity of Titus's disease was discovered. This past April he was diagnosed with a rare genetic disease called late infantile NCL, also referred to as Batten disease.
Danny and Bekah discovered that they both carried the recessive gene for this disease and that their younger son Ely had a 25% of having Batten disease as well. They had him tested and waited for the results. Their worst fears were realized when they were told Ely tested positive for the disease and would soon develop the same symptoms as his older brother Titus.
Batten disease is progressive and fatal with no cure. This terrible disease will take both of these sweet boys away from their parents in the early years of their lives. Titus has already lost his sight, his ability to walk, talk, eat, support his own bodyweight, and do just about anything for himself.
Friends of the Bowman family created this GoFundMe page. Our goal is to help them offset the mounting costs of care so that they can have some financial relief and focus their energies on loving their sweet boys and providing for their physical needs. If you would like to help, any amount $1.00 to $100.00, makes a difference. Your love, kindness and generosity in supporting this beautiful boy and his family are greatly appreciated.
You can also show your support for Titus (and Ely) by liking their facebook page: https://www.facebook.com/Team4Titus
Thank you for all of the love and support!
His gigantic smile says it all.... Titus loves his dragon Halloween costume!
Titus' at an early hospital stay before his Batten Disease diagnosis.... his big blue eyes and persistent smile charmed his nurses :-)
There were also the not-so-good days at the hospital. :-(You can follow Titus & Ely via the "Team 4 Titus & Ely" facebook page: https://www.facebook.com/Team4TitusEly