Hello, we are the Johnson family. My name is Shanda, my husband is Colt, our 6-year-old ALGS warrior is Camden, and we have a 3-year-old son Crew. We live in Atlanta, GA and Camden is treated at CHOA and CHOP. Camden was diagnosed with ALGS at 5 weeks old after the neonatologist noticed his direct bilirubin was climbing within hours of being born. For the first year, Camden was primarily treated at CHOA. We now also make yearly visits to CHOP to see Dr. Piccoli, as he helps manage Camden’s unique medical case. Since Camden’s ALGS diagnosis, he has also been diagnosed with Hypophosphatemic Rickets (inherited from me, his mom) and growth hormone deficiency. Camden has had approximately 16 surgeries in the last 6 years to treat craniosynostosis (a manifestation of rickets), spontaneous dental abscesses associated with rickets, and cranial hematomas (a by product of having skull surgery and bleeding issues).
Camden’s medical conditions have put an enormous financial and emotional burden on our entire family. My husband and I have missed countless hours and days of work to meet his medical needs and rely heavily on our family to help fill in gaps when we can’t be present.
I would tell any new family to give yourself grace. The first few years are difficult, but education, experience, and time will make this journey less painful. Slowly the trauma of the diagnosis dissipates, and you can experience your child and their happiness the way you always imagined. We celebrate the smallest milestones in our house because they once seemed so distant, so inconceivable. However, hard work and grit has brought us to the place where Camden is 6, in kindergarten, and living the happiest, most rewarding life we could have ever imagined.
My hope for Camden and all ALGS warrior’s future is continued awareness and treatment options. Camden is now on Maralixibat and while it has not completely removed his itch, he is able to focus on school and learn alongside his peers. We feel incredibly fortunate that Camden has access to this drug and are so grateful to those who worked tirelessly around its research, development, and approval.