Brighton's story is shared by her mom, Kelly Valoris Price.
When did you first notice something was different with your child’s health or development?
Around 4 months old I began to suspect something was different. Brighton seemed slippery when I tried to pick her up. At 6 months old she missed her milestone of sitting up, vomiting and seizures started and from there her condition got worse. She was eventually hospitalized for failure-to-thrive at 9m old and we received the diagnosis at 10m old.
How did you receive the diagnosis, and what was that moment like?
We had an outpatient appointment with Genetics to receive her genetic testing results that were conducted during her first hospitalization. When we received the diagnosis, I remember feeling like I couldn’t breathe, I didn’t know what questions to ask, and I felt so helpless.
What brings your child joy, and what gives your family strength?
Brighton really loves music, lights, and dancing. We will often play concerts on TV for her, put on galaxy lights, and dance while holding her. Our family focuses on how much love we can give to our girl while we have her here.
What advice would you offer to a newly diagnosed family?
One step at a time. Getting a diagnosis like this is a lot to process with a lot of uncertainty. Give yourself grace – there will be grieving, processing, and a lot of emotions and questions. There is no “right” way to feel. Please know you are not alone.
Document, document, document – I have spreadsheets for Brighton’s medications, doctor contacts, important notes, nursing schedules, etc. I use my calendar app and notes app on my phone. Find what works for you – binder, notebook, notes app, digital folder(s), or a combination of things – whatever it may be. It does not have to be perfect but get it started. We are often thrust into this life, and it can feel like playing catch up. It can be so overwhelming and exhausting repeat your child’s medical history – documentation will help ease that stress, as well as allow you to advocate efficiently and effectively.
Connect with the rare disease Mito community! These families get it! They can offer support, practical habits, or things that work for them that can help you in your journey. They also help you to feel connected when so much of this can be isolating.
Create joy and memories now! Create space for laughter, snuggles, music, stories, photos. Celebrate being together! Celebrate love! Your child is still your child. Your child is beautiful, special, and deeply loved.
