BROOKLYNNS battle with CDKL-5

Brooklynn Jones.

When Brooklynn was 9 months old she was diagnosed with CDKL-5 disorder (CDD). CDKL-5 is a gene, that creates a protein in the brain that is essential for normal brain development. When that gene in the brain is mutated or missing, it causes deficiencies in the protein which can lead to a very rare neurodevelopment disorder called CDKL-5 (CDD). CDD is a complex medical condition with symptoms affecting numerous systems of the body and impacting several essential functions. Brooklynn is now 5 years old and has been battling every single day of her life. She has been diagnosed with multiple different kinds of problems all being symptoms of her genetic disorder-

*Bruxism which is where she grinds her teeth unconsciously.

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At only 4 months old Brooklynn started having seizures, imagine a tiny 7lb infant convulsing uncontrollably right in front of you, that was the start of Brooklynns journey with CDKL-5, it was gut wrenching and heartbreaking. Not knowing what was going on and how to help. As a parent you feel so helpless. And honestly 5 years later our lives are very much the same, feeling helpless and heartbroken. We watch our beautiful baby girl struggle daily with seizures.

Brooklynn is so strong and such a fighter. We have tried many medications, recently flying to UCLA in California 1 to 2 times a month for the past 2 years to try and gain some control of her epilepsy, with little help, her seizures are extremely medication resistant. We were trying to use a medicine that She also has a G-tube in her stomach that feeds her because she stopped taking anything orally at one and half years. Even though Brooklynn is 5 years old she doesn't walk or talk, developmentally she is at the age of about 7 month old. She does go to therapy, and is in preschool she attends as much as she can but our lives are very much determined by her well being and seizures. In just the month of January this year Brooklynn had 184 seizures.

Our lives are run by her every move and so much is at stake, BROOKLYNNS LIFE. We as parents have so much pressure on us to make sure she getting everywhere and getting everything she needs, as far as making sure she is clean, Dr appointments, school, but also making sure she is happy and in a safe environment. We do have an awesome support system and have the best family we could ask for who would literally do anything for Brooklynn or us. Our goal is to make sure that we are able to provide Brooklynn with everything she needs now and in the future. After we finish with the therapy at UCLA which is at the end of this month. We would like to pursue another specialist in Colorado, we recently learned of him when we seen a story of another little girl here in central oregon with the same

We work very hard, both having full time jobs and are determined to provide for our family, our next big things are a wheelchair van and potentially a home. We have a hard time asking the community for help, but we also realize the realities of our situation and know it takes a village.

Even if you don't donate we appreciate you hearing our daughters story.

Thank you kindly,

Andrew, Shenay, and Brooklynn