What a gift to give a child- to have fun in the sun!

“ Despite the limitations and being different she would always make the best of it especially when the sun would go down. ”

For quite some time we were struggling to find out what my daughter(London, 13 years old) had. She would have painful reactions, swelling to her face, hands and feet, broken blood vessels and discolouration to these areas. She would have extreme sensitivity to touch, temperature and often felt like she was on fire. She would go several nights in a row without sleep.

After numerous trips to the ER department, two different hospitals and various departments we were finally given a true DX through genetic testing - EPP. This for a child meant - hiding indoors all summer long, being the only kid who can’t go out and ride their bikes with the other kids, watching her friends swim at the beach from inside and not participating in summer camps along with her friends. Despite the limitations and being different she would always make the best of it especially when the sun would go down.

“She spent her days on the beach, swimming in the ocean and playing beach volleyball. What a gift to give a child- to have fun in the sun!!”

Recently, we sought out different treatments to try and give London a normal life. This is where Bitopertin has came into our lives. We reached out to the team in Boston and London was soon entered into the third phase of the study. Not knowing if she was given the medication or the placebo we would come to find out while on vacation in the Dominican Republic. At last she was able to tolerate the sun.

She spent her days on the beach, swimming in the ocean and playing beach volleyball. What a gift to give a child- to have fun in the sun!!

- A parent of a child with EPP