I am Baran’s Aunty, a physician in Australia, who has been with Baran and her family all throughout her r(20) diagnosis and management. Baran (age 10) and her family live in Iran.

My experience:

Baran diagnosed with r(20) syndrome after being admitted at Great Ormond Street Hospital, London, by Professor Helen Cross after a year of sudden onset multiple day and night seizures. She has been seizure free for the past three years on combination Keppra (Levetiracetam) and Rufinamide therapy. Sadly, she had one episode of seizure yesterday.

My hopes:

I am very positive that soon we will have more hope for r(20) patients.