Friends and Supporters,
Today is a special day. Not only is it special because we get to tell you about an adorable little girl named Hattie. It is special because today is Hattie’s birthday! This sweet girl turns 7 today.
Hattie lives in the same neighborhood as us with her parents, Jessica and Kevin, and her big sister. We’ve had several conversations with Jessica and Kevin about their experiences raising a child with a rare disease and the challenges that come with it. What we’ve learned most from our interactions and seeing them around the neighborhood is hope. To see that they are taking vacations, coming to neighborhood swim meets, and generally being happy when we see them gives me that hope. I know this doesn’t come with its challenges, but to see a family thriving with a child with special needs in our own neighborhood gives us strength.
I’m also amazed at how parents advocate for their kids and find an outlet to tell their story. In a previous post I told you of a weekly podcast that another rare disease dad does. Hattie’s dad advocates and tells their family’s story through children’s books. We purchased his book, and it has brought us joy. Here is a link to his 5-star book on Amazon you can buy and read to your children (https://www.amazon.com/Comfort-Tree-Shes-My-Sister/dp/1954614241).
Hattie was diagnosed with Smith-Magenis Syndrome (“SMS”). Hattie has had difficulty meeting developmental milestones since birth. Early on, she struggled with low muscle tone which impacted her ability to eat, sit, walk, and speak. She continues to make great strides with her speech through the hard work for the past seven years to get where she is! She also continues to deal with chronic sleep issues, continual ear infections, constipation, sensory processing and more.
Hattie’s biggest challenges are being able to self-regulate in environments where there is sensory overload or situations that she may not have been expecting. These environments change from day to day and can be anything from her classroom at school, to a loud restaurant, or a room filled with people. She also has a hard time staying focused and on task. In these moments, Hattie’s inability to clearly communicate verbally often adds stress to the situation and can escalate into a significant meltdown which often could include self-harm behaviors.
Hattie is making great strides in helping to self-regulate. Recently, Jessica and Kevin witnessed Hattie self-initiating a break during a situation that could have easily overwhelmed her. She did this by finding a quiet spot all on her own. Once she seemed to have regulated herself, they watched her re-enter the room and enjoy herself. This happened over the Christmas holidays a few times at gatherings where there were a lot of people. They were amazed and proud to see her read her own queues and understand what she needed for herself all on her own. She managed through it without needing to be co-regulated or having the situation escalate to a meltdown.
Also, Hattie’s family recently got a new puppy. Jessica and Kevin are amazed with how caring and helpful Hattie has been towards their new dog. There was a time in her life where dogs were a major trigger. So for her parents to feel comfortable bringing a new puppy into their home was a big step!
Hattie’s entire family has learned to adapt to the challenges Hattie faces. Adapting to situations so it feels special and meets the family’s needs is something they have learned to do so that both girls get to enjoy the journey they are on. A good example of this is having a picnic dinner in the back of their car on a Friday night instead of trying to brave the crowds in a busy restaurant. They have learned what their SMS daughter can take on, and more importantly, they have learned to always be in tune with her and listen to her when she is telling them what she can and cannot handle.
Jessica and Kevin hope that Hattie will one day be able to function on her own as an adult, and that her community will always accept and include her. We asked Jessica to share about Hattie and who she is. Here is her response. “Hattie has an amazing personality, remembers the most random events, and makes us laugh every single day! She absolutely loves to help, adores her big sister, and is the sweetest little girl.”
Please consider donating to Parents and Researchers Interested in Smith-Magenis Syndrome (“PRISMS”). PRISMS is an advocacy, education, and support organization for individuals with SMS, their families, and the professionals who serve them. You can donate at the following link: www.prisms.org/donate.
With love,
Matt and Courtney
