Meet the Bennett family. The two youngest members, and twins, Aliza and Avigail, have NF.
“The twins were diagnosed with nf1 after seeing the Cafe au lait spots. We got concerned about Avigails eye since it was drifting, but we kept getting reassured that it was OK. We moved to the USA from the UK and met with our team who were immediately concerned about Avigails eye. The MRI showed a huge optic glioma which had damaged her right eye and was starting to affect her right. She just completed 14 months of chemo. She also has a hole in her palate, common with nf1 kids, and is having a big surgery to correct it in December.
Aliza has an optic glioma as well but it’s smaller and seems stable so we’re just monitoring it at this point. She has an enlarged liver and spleen which nobody can explain. She
also has a large plexiform on her face and we are meeting the craniofacial team tomorrow to discuss MEK inhibitors and surgery to see what will be the best way forward. The girls have regular MRIs every 3 months and Aliza’s has to be under general anesthesia (not sedation) as she coded last time under sedation. This is a very stressful routine for us.”
B Kind provided the 9-person family with three months of food assistance.