Today we were invited to participate in the Hillsborough Rotary Fair's Family Day for families of children with special needs. This day is one the girls look forward to every year. For a few hours they get to experience the joys and excitement of a fair that has made sensory adjustments so everyone can enjoy the games and rides.
Our township police officers held a National Night Out event this evening. Because we have received so much support from them and the other first aid responders we couldn't wait to go show our support for them. Upon walking up to the event we saw the local stables had set up pony rides. Pony rides are one of Phoebe's favorite things to do! She loves the grace and beauty of the horses. And to be completely honest, she is obsessed with unicorns. Horses are the closest she can get to a unicorn in real life. So if she gets a chance to ride one of these majestic creatures, she is jumping at the opportunity!
Phoebe, as a Jack's Kid, got to throw out a first pitch at the Softball Tournament this year. The love, support, encouragement, and friendship Phoebe and our family receives from the entire Jack's Kids family is truly a blessing beyond words. We are honored to be a part of such an amazing organization and encourage everyone to learn more about the amazing things the selfless volunteers of Jack's Kids do for the kids and their families by visiting their website at https://jackskids.org/
Today is Rare Disease Day. A day to raise your voice for the rare and undiagnosed community. A day to bring awareness to these incredibly brave, resilient, amazing patients who face "I don't knows" from their doctors. Today is a day for them to show their stripes. And for us to join them in showing that alone they may be rare, but together....we are strong!
On the 12th Day of Rare Christmas Phoebe wants you to know...12 things about Rare Disease.
1) There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
2) 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
3) If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country
4) In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
5) 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
6) Approximately 50% of the people affected by rare diseases are children
7) 30% of children with rare disease will not live to see their 5th birthday
8) Rare diseases are responsible for 35% of deaths in the first year of life
9) The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
10) According to the Kakkis Every Life Foundation 95% of rare diseases have not one single FDA approved drug treatment
11) Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
12) The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States.
To learn more or get involved in raising awareness for rare disease you can go to Global Genes website at https://globalgenes.org/rare-diseases-facts-statistics/
or National Organizations for Rare Disorders website at https://rarediseases.org/
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.