Diagnosis-Cyclin-Dependent Kinase-like 5 (CDKL5)
Our little princess Sabrina Ungatea Inoke daughter of Michael and Lofi Inoke, was born March 31, 2014. At 8 months old, Sabrina was diagnosed with Cyclin-Dependent Kinase-like 5 (CDKL5).
Sabrina is a blessing to our family. Diagnosed with CDKL5 has been a hard pill to swallow for us. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neurodevelopmental impairment. CDKL5 stands for Cyclin-Dependent Kinase-like 5, and is a gene located on the X chromosone. Most of the children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk or talk. Most cannot feed themselves, and Most will use a feeding tube. Many are confined to a wheelchair. Many also suffer with scoliosis, Visual impairment, Sensory issues and various gastrointestinal difficulties. There is not an exact life expectancy, So everyday is treasured with Sabrina. Sadly there is currently no cure for CDKL5. For more information on CDKL5, Please visit www.cdkl5.com
Sabrina had her first seizure at 6 weeks old. She has had up to 6 seizures a hour, in the 24 months of Sabrinas life she has had over 5,000 seizures. She has been in and out of the hospital the majority of her life. Sabrina has development delays and a feeding tube and works with a occupational therapist, physical therapist, feeding therapist and a vision therapist.
Regardless of the challenges Sabrina has been a huge blessing to our family. She has taught us so much about love, patience and sacrifice. We rarely see Sabrina smile, its been months. But when she does it brings us so much joy. We celebrate every little thing about Sabrina. We have learned to understand her. Her brothers 5 and 4 adore her. She is our princesses and has changed our lives.
Sabrina 2nd birthday was March 31st. We pray for strength, seizure control. Hope for the future. Time, love and happiness. #teamSabrina #sabrinainoke #Hope #Love #cureCDKL5