Tell us about yourself and the patient in your life:
This is Landri Heath from Nebraska! She is 14 months old and was diagnosed in December of 2020 with SMC1A. She had her first seizure at 3 months old (normal L&D and no health concerns noted). From 3 to 9 months old we struggles with seizure clusters, hospitalizations, intubations and refractory seizures. We currently are on med trial 8 and 9 and have had good seizure control but still having 1-5 weekly. Her seizures usually last under a minute. In January of 2021 she had congenital nasal pyriform aperture stenosis surgery to help widen her nasal cavity. Landri has a G-Tube but passed her most frequent swallow study on honey-thick liquids and is taking more orally all the time. She is rolling over and loves to babble but no words and not walking/crawling yet. She doesn’t show to many emotions (smiling, laughing) but is a very content little girl other than that. She is in OT, PT, and Speech/Feeding Therapy.
What is your hope for the future for your loved one:
Our hopes for Landri is for her to have the best quality of life possible and to find a cure for not only her seizures but for SMC1A.