Frances Changed My Life

As a Realtor, it has been one of my great joys to get to know clients’ children. Often, I take the opportunity to entertain them while their parents survey a prospective home. It’s always interesting, fun, and if lucky, creates a bond that they recall when they see me again, sometimes years later.  It’s been amazing to watch them grow and morph into young adults over my career and connection with their parents and I’m fond of those memories.

Frances is one of those children I have been blessed enough to get to know. She’s full of excitement, energy, questions and great hugs, often taking me by the arm as though I’m a treasured friend.  Her positivity, joy and love is palpable.

Recently, after years of research, doctor’s visits and chasing every lead, her parents have found that she suffers from an ultra rare (1 of 6 cases in the world) genetic neurological degenerative disease DHDDS. A disease that is so rare as to not be serviced by existing medical healthcare or insurance, forcing her parents to fund and manage her treatment almost entirely themselves.

However, recently they have been given hope that there may be a pathway to a cure, that Frances is a viable candidate for personalized medicine and at the very least, management of  her symptoms (which are quite scary: tremor, drop seizures, and myoclonic jerking).  In my conversations with Frances’ mother Zoe, it was a huge and difficult decision to go public with this and even harder to ask for help funding her medical needs. However, as musicians of renown (Portugal. The Man), their going public would also bring more attention to this rare disease and others which so need more publicity.

To be honest, there’s not much I can do personally, but as Frances’ friend, I can promote her cause and hope that I get to watch her blossom into beautiful, serene, healthy, adulthood. She is a special soul and she changes people’s lives.  If you’d like to donate or promote and for more information direct from the source, please click on this Go Fund Me link. FRANCES CHANGED MY LIFE

For other information or ways to help people with rare diseases, please click here: https://rarediseases.org/

Alyssa Starelli

Broker | OR

She/Her

A Portland native, Alyssa started her real estate career in the chaotic market of 2005, and quickly realized she reveled in matching particular clients with their perfect home, no matter how unusual...

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