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 DELILAH'S DIAGNOSIS 'The Reality of Rett Syndrome' Exclusive Interview with Ceceilia Baker Conducted by Allié McGuire “As fate would have it, when someone reaches out to you for one thing, you have the opportunity to reach right back for another thing. Ceceilia reached out to me on Instagram to connect about Multiple Sclerosis. Upon looking through her posts and seeing pics of her 11-year-old daughter, Delilah with the hashtag ‘rett', I reach back out to her. This is how I learned about Rett Syndrome. This is why I am thankful for the opportunity and honor to now share a powerful story that may change your entire perspective on life and its fragility.” - Allié McGuire ALLIÉ: Rett Syndrome (RTS) is a rare genetic mutation affecting brain development in girls. Extremely rare, there are fewer than 1,000 cases diagnosed each year in the US. Delilah is one of those cases. Tell us, Ceceilia about when your daughter was first diagnosed with RTS. When did you receive the diagnosis and how did you respond? CECEILIA: Delilah was diagnosed on March 8th, 2011. You never forget D-Day. When we saw the Behavior Specialist two months prior, she told me she was testing for Fragile X Syndrome and Rett - she didn't know much about Rett Syndrome, she had just recently read about it in an email. She told me NOT to google them and to wait for the result of the blood work. Naturally, I went back to work and google them. Everything about Rett described Delilah perfectly. I was terrified. It was like she had been given a death note. All of the photos, videos and things I was reading were shocking. I was a 19 year old single mother with a two year old little angel... I was lost and broken. ALLIÉ: What does a regular day for Delilah look like? CECEILIA: With COVID, Delilah isn't going to school, so we're pretty lazy! Delilah enjoys watching Disney+ and being her sassy little self. She's 100% dependent and wheelchair/bedbound, so I do everything for her. Stretching, bathing, clothing, etc. Delilah is tube fed, so every morning, I hook her up to her feeding pump after I do her medications (I usually do a song and dance around like a dummy while I do this… She loves it!). Delilah had spinal fusion surgery in August 2019 and since then, she has struggled with her weight. She is very fragile. We'd usually go for drives and try to get out of the house but she just doesn't feel up to it. We are hermits, more often than not. Rest assured, we will break her of that! Delilah is also nonverbal, we lovingly refer to her as a pterodactyl-baby. She is usually talking by screeching at us in one way or the other, keeping us on our toes.  ALLIÉ: What is the hardest thing about being Deliliah's mother? CECEILIA: The when, what if, and maybe... We've been told a few times that Delilah wasn't going to make it. She's outlived her life expectancy a few times, now. I couldn't be any more proud of my little warrior! But there is always that worry that when I wake up, she won't. The scariest thing about Rett is that they call it a 'silent killer' for a reason. ALLIÉ: Often, it’s the hard parts of life that make us stronger. How has RTS made you stronger? CECEILIA: Holy smokes... I had no REAL strength, patience, drive or will before Delilah. Then you add Rett. I have learned so much about myself and what I am capable of. I feel like anyone would. So many people say "I don't know how you do what you do" or "I couldn't do what you do"... You would! You absolutely would, Delilah is my entire universe. I feel exhausted and beat and just broken some days, but when I look at her...it is all worth it. There is no love like your child's love. She is my strength, hands down. ∎
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