Rare Disease Day

February 29th 2020 is rare disease day. A day dedicated to thousands of children and adults with a disease, syndrome or illness that is rare – meaning small numbers of people diagnosed.

Poppy is rare.

Now 130 confirmed cases of PPP2R5D or Jordans syndrome worldwide. There will be more but they are left undiagnosed for various reasons – age (adults no longer searching for the answer) , country of birth – not the same medical advancement etc.

We’re quickly heading to Poppy’s 11th birthday next week and I’m sat here thinking about her life so far. The opportunities she has been given, the friends she has made through the years, the many admirers she has gained just by being Poppy.

The world has come so far in the way children and adults with intellectual disabilities are treated and included. Poppy has an amazing school who’s motto is

Enhance. Empower. Enlighten

3 strong words right there enhance their students lives, empower them with education and the skills they need for everyday life. I feel the most important though is to enlighten – families, friends, the community. To look at our children and see how rare they are and how happy they are. They are “more alike than different” and everyone is blessed to be a part of their world. Inclusion into their world.

Alongside school she has been included in 2 cheerleading teams, Golf clinics and currently in a special needs baseball team.

The world has opened their eyes to these beautiful, unique and rare children ❤

Please take a look at the Jordans Guardian Angel’s social media pages if you don’t already follow.



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