New View for PAN – Page 12 – Kelsey's Kaleidoscope

Rare Disease Day 2020 – Guest Post

Rare Disease Day 2020 – Guest Post
“When we were children we were each told that we were special, that we were rare.

We grew up to believe that rare is this wonderful, almost magic like quality that we should protect. Yet when we get older I feel that society attempts to alter this beautiful and pure vision of rare. Rare goes from being something special and unique to different and other. Something that is not understandable that sits outside of the norm.

Unfortunately we see that echoed too much today with so many people who are suffering from rare illnesses physically, mentally and genetically like me. None of us would admit—oh well this disability, illness, or mental illness makes me uncomfortable but we’ve all had that passing thought. Because we no longer look at rare as beautiful, as a different way of approaching the world, as something to protect fiercely—but something to fix.

Today on Rare Disease Day, I’d like to challenge that perception. Whether an illness is mental or physical. Visible or Invisible like mine I want to speak out and encourage those that feel alone and different. You can have a debilitating illness and still live a happy and successful life. You can have schizophrenia and still have a family. You can have a physical disformity and still be an athlete or a model.

Now I have personal experience with this. It’s not easy. There are days when I’ve been so sick that I’ve felt like giving up. Like my life wasn’t worth living. I questioned why I was this way and I wished for nothing more than to be normal. But then I asked myself what is normal. Having DADA2 is my normal and it has shaped me so much as a person in ways that I am forever grateful. The adversity that I have faced has given me a compassion for others. Has shown me my strength. Has taught me how to be a voice for myself and the downtrodden because I know that no matter what circumstances life throws at a person they can and will overcome it. I have learn the power of the human spirit and the resilience in heartache.

You are always stronger than you believe. Nothing can ever conquer you. God never leaves your side not even in your darkest, loneliest, scariest hour. Even when you curse Him and are angry at Him, He continues to faithfully love you. I have learned what true love is. I have learned to face what scares me the most to stare it in the face and say: you will not have me; you will not defeat me. I have learned that I can do anything I want. That I am capable of so much more than I ever imagined. I’ve learned balance. I’ve learned it’s okay to ask for help and okay to say no.

I’ve seen beauty in tragedy. Which allows me to see beauty in life. Allows me to appreciate life more fully even if it’s something as simple as the wind blowing cooly against my cheek. I’ve seen the true kindness that lives within all of us. Which makes me believe in the innate goodness of humanity. I’ve learned to let people in—to love fully even if it hurts. I’ve learned that people want to love me. I’m blessed with amazing friends and family that have supported me through ever up and down of this journey. You cry alongside me and rejoice in my victories. I’m beyond thankful for how each one of you have touched my heart and influenced my story and path.

Having a chronic rare disease is not easy. It is upsetting. It seems like a roadblock. It is scary. It is a challenge. But then I’m reminded of rare. And while at times I hate being rare because I feel alone or isolated. I feel underestimated or as if I cannot fit into this world. I remember the beauty of a rare flower. The millions of people that come together to preserve a rare fish. The rarity and gift of life and our planet itself and I want people to know about this rarity of mine and thousands of others. It should be celebrated and not hidden. It is what makes humanity beautiful and diverse. It can pull us closer to understanding one another rather than drive us apart. Provide perspective. Rare is beautiful. Rare is a little bit of magic on this earth and today we celebrate that magic and recognize how it enhances the world while also recognizing that rare doesn’t isolate you from the rest of the world. You are meant for this world. Do whatever you want. Be who you want to be—you are valued, you are legitimate. Your life has worth. You are normal. You are rare.”

A RARE and beautiful woman’s journey…

Flu Season Woes

Our amazing pediatricians are always helpful when we need them. Recently, a prophylactic dose of Tamiflu had been administered to keep Kelsey feeling her best.

The next thing we know, Kelsey’s brother woke up warm and body aches started during day two. Unfortunately, he was diagnosed with the flu even after receiving his flu shot. Our house is now a zone of Lysol coupled with bleach.

We try so hard to shield our kids, but life is busy while we are making other plans. While Tamiflu emerges once more in our home, we are grateful for the caring team that works to keep our family healthy.

Stay healthy out there and wash your hands!

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School. Then we were humbled with gratitude and our community’s support for Kindness for a Cure. Kelsey lives in a community where she and another student suffer from a rare disease. This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser. Wow. The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge, students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you! (All!)

We are blessed and grateful for this initiative of kindness.

#BraveSquad

The stress that a rare disease places on a family daily is sometimes hard to truly describe. The quest for normalcy can sometimes drain us. However, sometimes it brings us together in ways we never anticipated.

Kelsey’s brother has started a movement. Since the start of the 2019-2020 school year, he has quietly supported his sister by wearing a BRAVE band. It is a small movement, but one he leads daily with his BRAVE band.

When it was time to join a school club to support business ownership and the process of how to run a business, her brother and his buddies got to work.

Together, they designed unique items and together the #BraveSquad sold their items. Proceeds of all purchases were donated to our organization. We are beyond grateful.

Kelsey’s brother has looked forward to this night since September and he proudly sold 115 BRAVE bands with all proceeds going to Kelsey’s Kaleidoscope, Inc. He does not always understand the rare journey we walk along together, but he has realized the importance of it in our lives. He quietly supports his sister daily. We are beyond proud.

#BraveSquad

#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?” Daunting. Amazing. Fantastic idea! Can they do it? Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016. They will offer grants to 30 recipients to advance research, training, and awareness. Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow. We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2. Here is to hope and generosity in 2020…

#RareAsOne

A Legend Loss

Legendary and iconic have been words used to describe Kobe Bryant. His love for the game and his family will be remembered fondly by all.

He was a role model, hard worker, and devoted father. #girldad

His Eagles’ victory dance went viral as his love for a city was made clear in 2018.

On a calm and quiet Sunday, a legend was lost along with the lives of other important lives. Gone too soon.

To those who aspire to dream and achieve, we will remember you Kobe, and what you brought a city, a team, and a sport. May your family find peace with those who suffered alongside you on that helicopter.

Image result for kobe bryant quote

Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life. Each of her nine years has been unique. She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced. To put it another way, it has been a journey. Each year of the journey has taught us something new. We are grateful for each year and the lessons we learned.

Year One taught us resilience. We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis. By the first birthday celebration, we bounced back ready to learn more and find an answer. Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate. In year one, we listened to poor medical advice and waited on others to seek solutions. Year one was painful. Year Two was the year of advocating. Remember to be your own advocate and advocate for your children’s needs, always. No one will ever care as much as you. We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen. Year Three gave us a diagnosis. We thought that would make life easier, but instead, it led us to more questions and further complexities. Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments. Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday. This scar will help us figure out how to get her there.” Listen. Trust. Breathe. That was Year Three.

Year Four taught us promise. There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child. A child who was once lifeless and listless was running and climbing stairs. Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability. We began this journey with Kelsey’s Kaleidoscope and we started to tell our story. We put ourselves out there and started to spread awareness and raise money for our foundation. We connected with others who shared our story. We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans. We had a fridge full of medication that no longer eased pain or brought joy. We were vulnerable and scared.

Year Six taught us patience. We trusted and prayed and after eight months of changes, a calm came for Kelsey. She was walking, running, and smiling with ease. We were patient and we were grateful.

Year Seven taught us endurance. The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way. We laughed, we cried, and we got each other through. It was not without a long road and another failed medication. Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope. We were beyond touched by the community efforts and new faces that learned of our journey and cared. We published a book, we went on television, and we reflected on where we are at this time. We have hope and gratitude.

Year Nine is unknown and undefied. Together, we are ready to persevere and lift each other. We plan ahead and dream big. We thank you for your support and kindness. We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

NEW Brave Bands

Kelsey’s brother started a mission in the fall. He wanted to join the school Entrepreneur club and sell his trademark Brave Bands. He wanted to donate all proceeds to Kelsey’s Kaleidoscope, Inc.

This small dream has already led to the design and purchase of almost 1,000 Brave Bands.

If interested in supporting a brother’s desire to find purpose and meaning in his family’s journey to raise awareness and fund research for his sister’s rare disease, please let us know. Brave Bands will be available for sale at the Market on 2/10. Presale designs will be available on 1/25/20.

New colors feature local colors and are featured below:

9 months to 9 years

At nine months old, we were escorted back to an isolated hospital room following a scan that utilized sedation to find Kelsey in the arms of a new doctor wearing her yellow hazmat-style shielding. She rocked Kelsey in her arms and an immediate connection was made.

This doctor was one who would work with us for the next (almost) decade. She became a role model to Kelsey, a comfort source when in pain, and a trusted ear for her parents. Words cannot express the gratitude a family feels when in the care of a trusted doctor for the child and the family.

Last week, the call we have anticipated arrived.

As Kelsey approaches her ninth birthday, this incredible doctor moves on in her career. She will no longer provide care to Kelsey.

Nine years have taught our family that having an advocate who will call you on the weekend, meet you late in the ER and arrange a 10:00 PM biopsy, and HEAR you are a true gift. Our family was blessed for nine years with such care.

Tonight, we met our new provider as Kelsey begins a few subtle signs of worry and concern. We are hopeful for a continued level of care from this doctor. In his own words, “I can see I have big shoes to fill.” Though in reality, the shoe size was small, the sentiment rings true.

A New View – 2019 Year in Review

A Year in Review -2019

Kelsey Hates the Needle was published and is now available on Amazon and Barnes & Noble. Book signings were held in Chicago, IL, and Deptford, NJ this summer to launch the book.

Breakfast with the Boss featured author Mary Wagner and illustrator Krystal Almora two times this year.#ThisisHowIbrave started with Kelsey’s design of Brave Bands and her brother’s commitment to wearing a band daily to show his support.

Brave Day

This November, Kelsey’s school held a Brave Day in her honor. Please click here to read the newspaper article regarding.

Thank you for your continued support and an incredible 2019. We wish you a happy and healthy New Year!

Kelsey’s Kaleidoscope, Inc.www.NewViewforPAN.org@kelseys_kaleidoscope