UR SO Generous

When Anthony Urso and the Almoras join forces for a Pop Up charity event to celebrate Chicago the Chicago Cubs all while supporting Kelsey’s Kaleidoscope, Inc., the president jumps on a plane to attend the festivities.

We cannot thank Anthony Urso enough along with Albert and Krystal Almora for their support and generosity.

The clothing is incredible, the company is fantastic, and the support was overwhelming.

Thank you is not enough, but it will have to do for now

Anthony Rizzo, Albert Almora, Jr, and Krystal Almora pose with President, Mary Wagner, and Elizabeth Gregorio.

Anthony URSO family

Anthony Urso and President, Mary Wagner.

Helpless to Hopeful

Sometimes I sit and stare at Kelsey in amazement.  I am continuously amazed by her beauty, her wisdom, and her poise.  More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.

Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala.   I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.

How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?

Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer.  The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you from the bottom of my heart.  No parent wants to live in fear or to feel helpless for their child.  Your support, generosity, and love helps my family feel more hopeful than helpless.

We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.

Our Third Annual Gala will be even bigger and better.  Save the date, November 23, 2018.

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Righteous Anger

Every week, I read about about the journey of Kelsey and her family.  This week it is my turn.

I am Kelsey’s grandmother, and Saturday night I went to see a movie, American Assassin—a spy thriller at its core but also a story about the limits to which one is pushed as a result of anger over a loved one. 

After approximately 15 minutes into the movie I started to cry hysterically.  I connected to the movie’s main character in a way that caught me off guard.  It finally hit me that, just like the character in the movie, my actions for Kelsey’s Kaleidoscope have been motivated by a combination of love and anger: righteous anger.  The difference though, is that my feelings are not fiction.  They are reality.

When Kelsey was diagnosed with PAN, I felt a sense of helplessness that I had never experienced.  As a mother and grandmother, I usually know what to do to fix things for my family and make them right.  This time, I was unsure as to if or how I could possibly help or improve Kelsey’s situation.  But there was one thing I knew for sure:  I would not sit on the sidelines doing nothing as my granddaughter struggled daily with a debilitating disease.  Therefore, I took the initiative to start Kelsey’s Kaleidoscope in an effort to fix the problem by raising money and awareness so that kids like Kelsey, who are afflicted by PAN or other orphan diseases, no longer suffer. 

I had always known that I was motivated by unconditional love and an instinct to make things right and better for my children and theirs.  But I now understand that I have also been motivated by anger:  anger over the unfairness of it all, anger from watching my beloved granddaughter suffer, and anger from the vast unknown. 

It has been difficult.  Raising money and asking for donations to fight PAN is the most humiliating and humbling task I have ever performed.  Indeed, it is righteous anger that gives me the strength and the courage to do it. 

In just under two years we have had successful fundraisers, generous donors and many discussions with researchers, doctors and other families who struggle with the same issues.  The support and response have been overwhelming.

It is with my most sincere gratitude that I thank all who have supported Kelsey’s Kaleidoscope.  We could not do this without you, and we ask for your continued support as we channel our righteous anger to continue our efforts to find a cure.

Together, we can…

Ralph Waldo Emerson once said, “cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously…” This week, I have given thanks continuously.  I am still in shock of the overwhelming elegance, promise, and love felt at Valleybrook Country Club on Friday night, November 25.

Maybe it was because the event followed Thanksgiving?  After all, Thanksgiving is a time to reflect on the year that has passed and all the blessings in your life.  During Thanksgiving dinner, Kelsey said that she was grateful for one thing.  She said, “I am grateful for tomorrow night.”  Grateful seems an understatement.  My family fought back tears at her sentiment because we realized that she is already aware of kindness and gratitude at five years old.

I encourage both of my children to stay positive, give thanks, and count every blessing.  It seems that they are noticing and applying the cultivation of gratitude in their day to day lives.  For that, I am grateful.  

I think back to Friday evening with wonder.  I stood before the guests in absolute awe of the compassion and warmth that everyone had for Kelsey, our organization, and our cause.  We are still overwhelmed by the support and generosity shared at Valleybrook Country Club.  The collective efforts of the night helped us raise $11,000.  

The support we received on Friday evening both fueled our mission and strengthened our purpose.  We are committed to raising awareness and finding a cure.  This week, we are one step closer to those goals.  We are grateful beyond measure.

In closing, Helen Keller states that “alone, we can do so little.  Together, we can do so much.”  Kelsey’s Kaleidoscope, Inc: A New View for PAN is just getting started.  We are on a mission to raise awareness and find a cure for Polyarteritis Nodosa and all affected patients.  Our affected patient is grateful for you and so are we.  Together, we will do so much.  

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