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Beandri’s Progeria Journey by Beandri’s Mom

We had 3 beautiful boys, but like any parents, we wanted to have a little girl. Our little Angel, Beandri was born 20 November 2005. She was a healthy 3.1kg gorgeous little baby girl, born with no complications, but soon we realized all wasn’t well. She didn’t gain enough weight and her features changed. After several visits to dermatologists, and an expert genetics Doctor, she was diagnosed a few weeks after her 1st birthday with #HutchinsonGilfordProgeria, one of the rarest diseases in the world.

There is currently only 112 children in the world with #Progeria, which is a rapid aging disease. We were very shocked at first, but afterwards decided to take it day by day and treat her like any other normal child, although it’s not always normal. Beandri has limitations with regards to activities that other children do with ease. She suffered her first stroke when she was only 6 years old and had

three TIA’s (transient ischemic attack), which is a minor stroke, but doesn’t cause permanent brain damage.

Her first stroke made her right side more weak, but she quickly adjusted by using her left side more. Her right shoulder dislocated twice, which is also a symptom of her disease. Dislocation of the hips are also very common. It is difficult for any parent living with a child who has a rare or terminal illness, but we believe that Beandri was given to us for a purpose.

We also believe, and we quote Bob Marley: “You never know how strong you are, until being strong is your only choice”. We only want people to accept her as she is and not make ugly comments. Rather ask us what she has, than gossiping, it really hurts a lot.

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