Cecily is a joyful, affectionate, and social four-year-old from Saratoga Springs, New York where she lives (and enjoys lots of cuddles) with her mom and dad, Lizzy and Louie, and her siblings, Daphne and Louis.
This month’s “Everyone Belongs” t-shirt design is inspired by Cecily’s story.
After a typical pregnancy and birth, Lizzy and Louie welcomed their second child, Cecily, into the world in February 2017. A few months into her life, Cecily’s pediatricians started to see some concerns, but none of them pointed to the journey they were about to take with Cecily.
Lizzy shares, “For a long time our theory was that she wasn’t hitting milestones because she couldn’t see well. We thought it all was connected to her vision, and once we were able to tackle that, then everything else would improve. But that wasn’t the case.”
Around six months old, Cecily had her first procedure to improve the alignment of her eyes, but Cecily continued to not reach milestones. In the first year-and-a-half of her life, Cecily went through a lot of procedures including MRIs, bloodwork, and a test for SMA.
“We were doing tests after tests trying to figure out what it could be, but we still really thought it was nothing. Then in May 2018, one doctor diagnosed her with Global Developmental Delay when she was 15 months old.”
Reflecting on that time, Lizzy shares, “It was like a moment frozen in time. Sometimes I feel like there is always a part of me that is still in that room. He told us that she will have a lifelong disability, may be nonverbal, and have the intellectual capacity of an 8-year-old at best but possibly much lower. In one pivotal moment, all of the hopes and dreams of what you think is in your child’s future are knocked down. It was a really hard moment.
A geneticist at the Boston Children’s Hospital later told us that we may never know the cause, so we were prepared that having Global Development Delay was going to be a lifelong part of who she was. There is no treatment or fix, but it would still be so helpful if we could figure out what the cause of it was so we would know which resources to apply.”
The doctor worked alongside the couple and fought months of insurance company battles until Cecily was finally able to get exome sequencing.
The results came back and in October 2018, Cecily was given the diagnosis of Pitt Hopkins Syndrome, a rare genetic neurological disorder that has only affected approximately 500 individuals worldwide.
Some of the other challenges Cecily faces are with her fine and gross motor skills along with being at risk for seizures, breath-holding, and sleep disturbances.
Today Cecily is a four year old who loves swimming, music, time outside, and having books read to her. She loves playing with her older sister, Daphne, and snuggling with her little brother, Louis.
She continues to work with therapists on her motor skills and loves to participate in activities such as little league and ice skating.
Lizzy dotes on Cecily. “Despite everything, she has a very happy demeanor and loves to be around other people. One of our worries is that her diagnosis will prevent other people from connecting with her. Intimacy and affection are so important to her. Some people need coffee in the morning, but Cecily only wants a long hug when she wakes up and then she is ready to start her day.”
When thinking about Cecily’s future, Lizzy and Louie strive to give her a life full of peace, joy, and safety. Louie says, “Cecily loves animals and having a furry companion by her side would not only give us peace of mind when it comes to seizures and mobility support, but would also give her a lot of joy and allow other kids to find a way to connect with her.”
Time to get loud shouters!
Throughout the month of September we will be shouting loud for Cecily!
So click here to shop now where every purchase in September will help the family get a service or therapy dog for Cecily.
To help support kiddos like Cecily every month, click here to start a monthly subscription.