Nicole: Can you share a little bit of Harper’s story with us?

Kellie: Harper was diagnosed with a rare neuro-developmental disorder called FOXG1 Syndrome in the fall of 2019.  She was born at a healthy 9 pounds, 3 ounces and appeared to be typically developing until we began noticing at 3 months that her eyes were crossing, she wasn’t progressing with any of the early developmental milestones, and she just felt floppy.  We spent the first year of her life seeing various specialists and we were able to do exome sequencing, which gave us an answer as to why she was having challenges.  Harper’s diagnosis is so rare there are currently only 690 diagnosed cases worldwide. She works so hard in all of her therapies and is blossoming into a funny, interested, and sweet little toddler.  

Nicole: What are Harper’s biggest and best strengths?

Kellie: Harper has always been incredibly social and loves to play.  She’s very determined and is always so eager to practice walking in her walker.  She always works so hard in all of her therapies.  This kid can eat, too! Mealtimes are a favorite of hers and developmentally, eating has been a strength for her than other skills. She absolutely brightens any room with her smile and her laugh is infectious! 

Nicole: What does your child love to do? (activities, hobbies, etc)

Kellie: Harper LOVES to go on neighborhood walks while riding in her pink Jeep and swinging at the park.  She adores playing music games such as “head, shoulders, knees and toes.”  Water play has become a new favorite and she can’t contain her excitement when she plays on her aqua pod or with her water table. 

Nicole: What is your mission as an advocate for your child?

Kellie: As a pediatric OT, I’ve worked with so many children with varied disabilities and have always believed in inclusion.  Now that I have my own child with special needs, I am more determined than ever to normalize disabilities in our society. There is such an incredible under-representation for people with disabilities and I hope to participate in advocating for legislation to expand disability rights. 

Nicole: What has your child taught you?

Kellie: Harper has taught me that life is not fair but that doesn’t mean we can give up.  She wakes up everyday with such a determined spirit and always finds a way to make us smile, even on the hard days.  This first year post-diagnosis has been an emotional roller coaster, but Harper has taught me to always have hope and to not let her diagnosis define what she is capable of.  

Nicole: What are some of your favorite resources as a parent?

Kellie: Since Harper’s diagnosis is so rare, we’ve heavily relied on the support from @foxg1research and the FOXG1 community.

Nicole: What do you want the world to know about your child?

Kellie: Harper is a beautiful, curious, and sweet 2 year old girl who loves to play, eat macaroni and cheese, and read stories like most toddlers.  She has a fierceness about her that will serve her well as she grows, matures, and works towards meeting her milestones on her timeline.  She is quite simply the best thing that has happened to our family.

You can follow Harper’s journey on Instagram, @k_e_l_s_o.

2 thoughts on “Harper’s Diagnosis Is So Rare. There Are Currently Only 690 Diagnosed Cases Worldwide.”

  1. Beautiful love story of sweet Harper Ann! Your words are so touching, Kellie- truly Harper has brought life, love, joy, hope and sunshine to you & Jason! She is an adorable 2 year old little girl- her smile lights the world and her tenacity inspires us all. God bless, beautiful Harper, mommy, daddy, family, friends and awesome medical team. We love you, sweet angel Harper- your name is posted on my wall where I walk by it many times a day and whisper a prayer or two for you. 💝🙏🥰 With love & blessings always….XO~Janet Sanders & family

  2. Harper is so lucky to have you both as parents! She’s such a sweetie pie and an inspiration (and so are you and Jason for your dedication and perseverance). Your family is a prime example of what unconditional love looks like. Harper may not have the easiest path but she’s a success story and will continue to amaze us with her progress!

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