The Hallam Family

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Harlow was born a healthy baby on January 21, 2019 to Amanda and Antonio Hallam. She had no out-of-the-ordinary signs or symptoms of her disease. She was a fussy baby who, like others, did not sleep well. She needed to be held constantly and it was assumed she was just a needy baby. Her first diagnosis was Clubfeet, for which she started a series of casting. At three months old, she began having Focal Tonic-clonic (Grand mal) seizures. These occurred mostly upon waking from sleep; however, they happened while awake at times, too. These seizures rapidly increased within days. She was admitted to Golisano Children’s Hospital in Syracuse for eight days. There, she then was diagnosed epileptic.

The Hallam family were then strongly encouraged to get Harlow genetically tested, as there were no obvious causes for her seizures. They continued for six long weeks, as the first medication was not successful. After six weeks, Harlow began a new medication in conjunction with CBD and she seemed to respond well to it. Due to her continuous seizures, feeding issues, and lack of childcare for someone with needs like Harlow's, Amanda had to resign from her position with Herkimer BOCES. Following this, she lost her second job of fifteen years as well, due to COVID-19. This has left Antonio as the one parent capable of working. Shortly after, the family went to Boston Children’s Hospital to meet with the genetics, neurology, sleep, and PACT teams. It was here that they learned Harlow has a rare genetic mutation known as RNF13.

There are only four other children reported in the world that have this same mutation. It is very difficult to compare Harlow’s progress to the other children. The sequence of this mutated gene is not the same as the others, leaving her a bit of a mystery. So far this gene mutation is both low tone and high tone. Harlow experiences neurodevelopmental disorders like epilepsy and microcephaly, along with other abnormalities (such as thinning of her corpus collosum and mild hypoplasia). These issues have collaboratively resulted in her being nonverbal and non-ambulatory.

Harlow has endured many EEG’s, sleep studies, tendon release surgery, blood work and countless hours of therapy. Currently, she is seeing four early intervention therapists throughout the week (PT, OT, Speech, and Special Instruction) and soon, she will start occupational therapy at Upstate University once a week. Here, Harlow is also followed by a developmental pediatrician who (thankfully!) advocates for Harlow and her independence, which requires adaptive equipment.

As we present to you the struggles Harlow has had since day one, along with the hardships of her family, they persevere. Harlow is strong, vibrant, and a true warrior. She has overcome so much in such a short time! Despite the barriers she faces, she shines so bright, that you cannot miss her smile. The support she has from her parents, brothers, family, friends, and medical team is overwhelming!

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