Tag: Rare disease advocacy

I hate today

Today is MPS Awareness Day. The day annually reminds me of how my son is defined. How I’m defined. How my family is defined. We have the boy with the rare disease. Lots of medical appointments. Surgeries. A four-hour infusion once a week. My son looks different.

When Cooper was first diagnosed 10 years ago, I embraced MPS Awareness Day. I advocated! Did interviews! Organized activities at the school! I asked everyone to wear purple and created photo collages of all our support.

MPS Awareness Day Collage, friends wearing purple for Cooper – 2015

Ten years into this journey, and I want to hide. I don’t want to talk about what makes Cooper different. I want everyone to see the stuff that’s INSIDE my kid that is like everyone else. He loves sports and Fortnite. Farting is hilarious. School is hard. He’s funny. He’s sweet. He loves his new bike – it’s just smaller than all his friends’ bikes.

I am so freakin’ tired. But this is my journey. We decided to stick our necks out and show what our life is like. I don’t regret it. It’s just harder some days.

So this is my challenge. Let’s redefine it. Redefine US. Let’s not talk about MPS and the shit sandwich it has handed to us. Let’s talk about moving the needle. Let’s make things better for Cooper and others like him.

Please share my ask – I ask for funding to install stepstools in the bathrooms at Children’s Hospital Colorado. Why are there no stepstools in restrooms at a children’s hospital? As Nate Bargatze (as George Washington) says, “Nobody knows.”

Let’s fix it. Let’s fix it for the little kids – and the big kids with short stature, like Cooper. Let’s make THIS Cooper’s legacy – giving, caring for others, making change. Here is the link to make that change:

Stepstools for CHCO

If you are new to this rare disease journey and just found my post, please don’t let my rant disturb you. It’s gonna be hard. This is what’s hard for me, 10 years in.

—— Author takes 1.5 hour nap, has a glass of water and an apple, returns to writing ——

I’m feeling refreshed, but still emotional. My heart feels tight, and my soul is sad. So everything I said up top? It’s legit, I still don’t like today. “Hate” is a strong word, but that’s how I feel. Now it’s time to do what I can.

Am I wearing purple today? Yes. It was the outfit of the day as I attended Mass with my parents and aunts. Father’s intention for Mass was Cooper. Aunt Mary Ann, my mom, my dad, and I all wore our Cooper’s Troopers T-shirts. I cried on the way to mass. I knew the significance of the day and was dreading it. Events like this are like picking at a scab; it brings a flood of memories from the hardest time of my life – diagnosis.

And did I advocate today? Yes, to a classroom of kindergarteners whose innocence, sense of wonder, and excitement renewed my spirit. One of their favorite books is Super Cooper Wins the Stanley Cup, and they know that Cooper is Mrs. Kruse’s nephew. I had the opportunity to answer questions about Cooper, mainly about Cooper’s height, and the fact that the Colorado Avalanche are no longer in the playoffs. (Both disappointing.) I promised I’d bring Cooper back to meet them in a couple weeks. They are reading other books about how everyone is different and being different is OK. I couldn’t love the message more.

Let’s wrap up this rant. Fundraise for stepstools. Accept people who are different. The end.

deja vu

Today as we were driving to Children’s Hospital Colorado for Cooper’s appointment, I had a moment on the highway. I was just here. A week ago. Driving with Cooper in the backseat. Last week we did this trek for a Patient Ambassador opportunity. Cooper was the orthopedic patient chosen to share his story (OK, I was the one who shared his story), and he pumped up the Orthopedic Department and jump-started their Courage Classic team, Bony Express. In related Courage Classic news, check out my cousin Monica’s Courage Classic page. She’s dedicating her ride to Cooper. She’ll ride MILES through the Rocky Mountains to help kids like Cooper. Throw her some donations and/or well wishes!

Today we are at Children’s Colorado for Cooper’s Neuropsych appointment. This is the fourth time he’s been evaluated by the Neuropsych team. As I explained to Cooper on the way here (right after the deja vu moment), this examination tells us about how his brain works and will help us determine what we can do at school and at home to help him.

But the real deja vu moment is the fact that we used to make this trip to the hospital EVERY WEEK for infusion. For years. Me, Coop, Velocity, and my backpack stuffed with electronics and food. Today, my backpack was stuffed with my computer, and two creative writing books. This afternoon, a prompt in the book What’s Behind the Blue Door by WriteGirl really got me thinking outside the box.

“Our moods can be like weather patterns inside us. Write about what the weather is like inside you right now.” hmmmmm……… My response:

Current Weather:

Calm or Unslettled?

Calm before the storm? Or recovering from the storm while the flood water receeds?

If Aunt Meg’s windchimes in Wakita are an indicator, what are they doing? (Reference from the 1996 Twister movie.) Swaying and tingling in the breeze or the scene after the tornado ripped through her home?

I don’t have a seven day forecast, let alone a 10 day outlook! Is there even an answer when you Google “weather in May for the Tippetts”? Nope. It’s just the little blue circle, spinning, spinning. Previous Mays have seen celebrations, preparing for surgery, traveling for MPS awareness, school mayhem, enjoying hockey and graduations. Mourning. There is no normal weather pattern for May.

But I think my current weather is calm. And the funny part is – my calm may resemble an F5 tornado to some, but I know it looks like a sunny spring day to others.

I loved writing the response by hand in my handwriting. I also enjoyed comparing my life to the weather. I think it’s fitting we live in Colorado, and the weather here can be CRAZY. So are my moods.

So anyway……… Being at the hospital again inspires me to take action. MPS Awareness Day (May 15) inspires me to take action. After Cooper’s two-year term as a patient ambassador for Children’s Hospital Colorado, I realized there is more work to be done. Cooper is built differently, and to utilize restroom sinks, he needs a boost.

Just a regular kid, getting a boost to wash his hands

Although I’m really good at balancing on one foot while holding a 40-pound 12-year-old on my other knee, I want to foster his independence. One way to do this is to make restroom sinks more accessible for people with short stature. Stepstools! And we’re starting at Children’s Hospital Colorado. Help us provide stepstools for kids and people with short stature in restrooms at Children’s Colorado. $750 provides a stepstool for one restroom. Our goal is to provide 35 stools. Visit Cooper’s fundraising page to make a difference.

So deja vu hits again. Here I am AGAIN, taking action for MPS Awareness Day, asking for donations, trying to make the world fit my kid, and telling you all about my mood/weather. Reporting live from Littleton, Colorado, Chris Tippett (non-meteorologist) signing off.

Blown Away

Cooper is the subject of the new children’s book, Super Cooper Wins the Stanley Cup, written by Jack Gates. Proceeds from the book support Triumph Together, a non-profit program that works to connect collegiate and professional athletes with kids at Children’s Hospitals by getting them tickets to games, meet and greets with players, signed gear, videos of encouragement before surgeries, etc. Jack and his work have already created a lifetime of unforgettable memories for Cooper.

Jack, a San Diego resident, joined Cooper in Colorado to promote the book. But first, they spent time at Children’s Hospital South Campus, handing out the book and the Coloring and Activity Book to kids who share the same hallways Cooper so often visits.

Cooper’s post about handing out books at Children’s Hospital Colorado

Seeing our hospital family was a heartfelt homecoming. We were at the hospital for Cooper’s infusion 6 – 8 hours one day a week for 7 years. We did COVID with these ladies, they hugged me as I cried and prepared for Cooper’s surgeries. They welcomed us with open arms and every comfort possible when we came back after surgery. We celebrated and decorated for holidays and birthdays together in those sterile rooms. They found the best toys and activities for Cooper to pass the time. They helped Cooper with homework. We shared parenting trials and tribulations with them. They brought extra pillows and blankets for Velocity. They celebrated 5 years of treatment with Cooper in a day he called “The best day ever”. They fix his hearing. They cooked him his favorite chocolate chip pancakes. They welcome him at the front door.

It was in one of those sterile infusion rooms during COVID that Cooper first met Jack and some of the Colorado College hockey team on a ZOOM, playing a simple game. From that ZOOM, Jack easily recognized Cooper was a big hockey fan. Next came an autographed goalie stick from the Colorado College team. Then tickets to Colorado College hockey games, a VIP tour with the players, speaking to the team in the locker room after a win. Then Jack wowed Cooper with a pre-game ride on the Zamboni, and an autographed stick from Trevor Zegras when we were in Anaheim to watch the Colorado Avalanche play the Anaheim Ducks. Now Jack makes it a point to hang with Cooper when he’s in town – Dave and Busters, ice skating or Top Golf – any 11 year old’s dream.

On the way to Cooper’s book singing on Wednesday, I told him, “Cooper, this may be a weird comparison, but this is like a wedding. People from every part of your life are coming to support you. It is rare that this happens – that people from all parts your life – teachers from 6 years ago, family, friends, your dentist, neighbors, past nurses, all physically show up to celebrate you at a certain time and date.” It was definitely like my wedding – I stood and talked and hugged everyone for hours. We sold out of books (54)! Many people brought the books they bought on Amazon for Coop and Jack to sign. Velocity even had a paw print stamp for her own signature. Cooper and his quick wit had a good line for everyone. “To the mustard family” “Keep my mom busy” and even “I need food”.

A MASSIVE thank you for coming out to be with us at the book signing. Thank you for purchasing the book on Amazon, and leaving reviews. I’ve always believed that there is power and purpose in sharing Cooper’s journey and this book is the next step – funding Triumph Together to help other kids.

This summer is a blessing. No surgeries! Beach vacation! Cooper’s first time participating in the Dwarf Athletic Games where he got to play basketball, soccer, football and swim with kids his age and SIZE. He made new friends, and played his heart out for a week.

I finally have time to reflect, process and write this weekend while I’m in Massachusetts with Campbell for her hockey tournament. So now I need to go watch the other half of my heart live her best life.

Having all cylinders firing on good summer vibes has me Blown Away.

Rare Disease Day 2024

You know what today is? Leap Day, February 29th, the rarest day of the year, recognized as Rare Disease Day.

In years past I have been on the local news, sharing Cooper’s journey with the community:

February 28, 2015

In years past, we visited the Colorado State Capitol to advocate for those with Rare Diseases:

February 29, 2016

In years past I have been in DC, speaking with congresspeople about how to better serve those with rare diseases:

February 27, 2017
February 24, 2020

In years past, I’ve attended conferences to learn how to advocate for rare diseases. Later I helped lead advocates to Capitol Hill to do the same.

Rare Disease Week Conference – February 26, 2019

In years past I have been at Cooper’s school, doing activities and handing out cookies, raising awareness for Rare Disease Day.

February 28, 2018

Today I don’t have the energy to beat that drum. I hear the drumbeat – people around me on social media, my mom handing out cookies and raising awareness at church this morning, my memories popping up in what seems to be a million meaningful photos.

I feel guilty that I haven’t done a darn thing for it this year, so I guess here it is:

I’ve been at this for 10 years now. I’m done praying for a cure. Instead I pray for mercy. I pray for empathy. I pray for compassion and understanding. I pray that I can wholeheartedly embrace the present and lift Cooper up the way God intends me as Cooper’s mom. I pray that I am a good example of how to treat others.

I imagine I have a different filter on life than most people. I want to spread that filter to better help humanity, not just Cooper and those with rare diseases.

So yea, it started with Rare Disease Day and a bunch a statistics:

  • 70% of genetic rare diseases start in childhood
  • 5% of the population are currently affected by rare diseases (that’s 300 MILLION people worldwide living with a rare disease)
  • 1 in 10 Americans have a rare disease
  • There are over 6000 identified rare diseases
  • 72% of all rare diseases are genetic

Cooper is the face of those statistics. I’m making a difference NOW, with an impact bigger than our rare disease community. How about you?

Let’s start this way:

  • Embrace and include those with differences
  • Don’t stare, say hi instead
  • Don’t look away, say hi instead
  • Listen
  • Refrain from being judgmental
  • Smile

We are still funding Morquio research – answers and better treatments are out there and I hope that they are in time to help Cooper. But my time and energy is here with these awesome kids today.

Exploring the gray area between “Hell Yes!” and “Hell No!”

I’ve been living by a new motto lately, “If it’s not a hell YES, it’s a hell NO.” It’s been liberating.

Then last month I was asked if I’d like to represent the MPS IVA community at the University of Minnesota Medical School’s Mucopolysaccharidosis Newborn Screening Meeting, providing perspective on what a newborn screen would have meant regarding an early diagnosis for Cooper.

  • Do I want to travel and spend a few days in Minneapolis?
  • Do I want to catch up on work at night while I listen to Newborn Screening topics during the day?
  • Do I want to watch my family coordinate what appears to be more complicated than the moon landing to cover for me while I’m gone?
  • Do I want to re-live Cooper’s diagnosis, feel all the things, share my feelings and experience with a room (and internet) full of people?

Not really. But is it important? Yes. I’m here.

Tomorrow is my 15 minutes of fame. So, what would having known Cooper has MPS IVA at a few days after he was born (instead of at 16 months of age) have meant?

  • earlier treatment (weekly Enzyme Replacement Therapy infusions)
  • connecting with the right folks (National MPS Society, Children’s Hospital Colorado) earlier
  • less symptoms for Cooper (medicine would have had 16 more months to work)
  • no diagnostic odyssey

Cooper had symptoms at birth, but we and his pediatrician didn’t know the symptoms to look for. Cooper was diagnosed relatively early. I know of other MPS IVA families that have had a horrific journey finding the correct diagnosis, and in the meantime, missing out on years of treatment. MPS does irreversible damage. Treatment slows/stops the damage – it can’t reverse it. So if there is treatment, and a way to diagnosis it, let’s know about it right away, OK?

While in Minneapolis, I figured I’d treat myself to the Minnesota Wild hockey game. I’ve been to NHL games by myself in new cities before – this would be fun and exciting! I love ice hockey! But after the last session today, I came back to the hotel. I took off my shoes and flopped on the bed. I took a nap. I watched reruns of The Office. I played a game on my phone. I lounged on the bed for four hours. I beat myself up for not checking in on work, not participating in the happy hour, and not going to the Wild game. But I was reminded I needed to relax. I deserve it. So my pampering today looks like a hotel room with the remote all to myself. Not the beach or spa I have in my mind when I think of “getting away”.

After my lavish downtime this evening, I put my shoes on, found dinner and drinks in the hotel bar, and watched the Colorado Avalanche game while I caught up on work.

Tomorrow I’ll share my experience alongside others in our situation – we have a treatment but had to find the diagnosis on our own. Then I’ll go home and participate in what I call “re-entry”. Just like a spacecraft coming back to Earth with astronauts, I’ll jump back in to family life.

Cooper called me while I was at dinner tonight. He needed to know where the note cards were. He is working on his Ted Talk that every 5th grader at his school does. Cooper’s first line is, “It’s hard being a 3-foot-tall fifth grader”. He goes on to talk about his disease, all his surgeries and how he feels when people gawk at him. Our short conversation made me realize this mission to Minneapolis was a “hell yes”.

Running on Empty

We’ve had a whirlwind of fun in our family this week.

First, an exciting (albeit frigid) trip to Toronto to cheer on 13-year-old Campbell and her hockey team as they competed in the International Silver Stick Tournament. We enjoyed the hockey hall of fame, ate poutine, fell in love with Tim Horton’s, visited Niagara Falls, and did each step in the warm embrace of our hockey family. Oh, and we watched hockey. We cheered with every ounce of our soul. As parents, I argue that we experience more stress watching than the girls do playing hockey – although I’m sure they burn more calories. We want so badly for each of them to succeed, to be proud, to win. I swear I have a new heart condition from being a competitive hockey parent. Which is competitive, the hockey or the parent? I’ll let you decide.

The day after our return (Tuesday), Cooper, Velocity and I made the trek to Fort Collins, visiting Colorado State University’s chapter of Canine of Companions, Collar Scholars. Collar Scholars are CSU students who raise and train puppies for Canine Companions. It was Cooper and I’s first time visiting a Collar Scholars meeting, but guess what? Velocity was raised at CSU, so this was a return to her alma mater. She was a rock star, on her best behavior. I shared our journey – Cooper’s rare disease, his surgeries, appointments, infusions, struggles, and why he qualifies for a service dog. Cooper spoke to a room full of college students as if he had been practicing for it for years. We thoroughly enjoyed our visit with both the people and the puppies.

I guess we could say it’s Cooper’s first college visit? Check it out:

Wednesday afternoon, Cooper and I visited DJs Slacker and Steve at Alice 105.9, to participate in the Alice Cares for Kids Radiothon benefiting Children’s Hospital Colorado.

Coop and I had met with them previously via Zoom, sharing our entire story. An audio montage was created from the Zoom call. I had the opportunity to listen to the montage prior to Wednesday’s visit, and I’m glad I did. I cried big, gut-wrenching sobs. Every time I share our story, it’s like picking at a scab. Remembering all of the appointments, the heartbreak, the fear and the diagnosis digs deep into the past, into my heart, into my head. Hearing our montage, the scab came off – way before it was healed. (It’ll never heal.) So Wednesday night we visited for the on-air interview. Prior to the interview, they played the montage. I’ll let you listen. It was a really fun and special event.

Montage of our journey:

Live interview:

ps. I’m sorry Cooper said he doesn’t think the Avalanche will win the Cup this year. I just hope we aren’t run out of town for his comments. LOL

So, as you can imagine, I’m a bit drained. The week has had intense emotional swings that have taken a t toll. I occasionally nap during the day. I’m exercising, drinking water and making sure I fuel my body appropriately. I am held tight by those who lift me up, but my soul is tired.

My task is not complete. My task will never be complete. Our journey won’t be hidden, forgotten or swept under the rug as “a bummer”. I share our journey to educate, to teach empathy, to embrace others with a similar path.

The last day of February is Rare Disease Day. I’ll participate in Zoom calls with our legislators and share our story again. I’ll ask for legislation that will help people with rare diseases. We’ll “celebrate” it at Cooper’s school and raise awareness there. I’ll draw energy from the excitement and then crash. And then do it all again (while cheering on Campbell, because I’m her mama too.)

Reflecting on our journey

On infusion days, Cooper can be found WIDE AWAKE long after his bed time. He’s happy and chatty. Tonight, he couldn’t fall asleep in his bed, so he grabbed his book and crawled into our bed to read until I could join him. He finally wound down and closed his eyes. As I watch him peacefully sleep after a long day at the hospital, with Rare Disease Day quickly approaching, my heart had some things to say…

Thank you Lord for this journey with Cooper.

For the empathy it continues to teach me.

For finding my voice as an advocate for Cooper, and figuring out how to advocate for myself at the same time.

For the compassion I have grown to have for people in all walks of life.

For the angels on earth we meet along the way – those who lift us up.

Please give me strength to fight the battles.

Please give me wisdom to know which battles to fight.

Please give me grace to be the mother I need to be for both Cooper and Campbell.

Please give me the energy, words and actions to pay it forward and adequately recognize and thank those angels among us.

Thank you for this journey. Please continue to show us the way.

Amen

Our Turn

It’s taken me a while to wrap my head around this, so let’s start at the beginning:

Our 6 year old son Cooper has a rare, progressive disease called MPS IVA. It affects every organ of his body (except his brain), and has SEVERE skeletal implications. We are blessed to have a weekly infusion to slow/stop the progression of the damage to his organs, but the only way to address the skeletal issues is with surgery. It’s time for the first Orthopedic intervention.

Cooper will have surgeries on both hips, knees and ankles in June. This will relieve the constant pain in my first grader’s hips and knees and keep him mobile for a while longer. The surgeries will be done by Dr. Mackenzie in Wilmington, Delaware. He’s the orthopedic expert on Cooper’s condition, so that’s where we’re going.

The surgeries will be one week apart. The right hip, knee and ankle first, followed by the left hip, knee and ankle seven days later. This procedure will leave Cooper in a spica cast, from his chest to his ankles, for seven (what I imagine will be grueling) weeks. We will fly home after the second surgery. Cooper and I are booked first class on United on the way home, so that he has room for his new “width” with the spica cast. The rest of the family gets to fly coach, or swap me seats when I need a break. After seven weeks, we fly back to Wilmington to remove the cast, a check-up, and five days of intense Physical Therapy. Then we fly home again, ready to strengthen and use those new legs, just in time to go back to school.

This surgery will be FREE! HA! Only because we meet our out of pocket max for Cooper in the first week of the year, due to Cooper’s weekly infusion cost.

Getting to the surgery will not be free. We’ll fly the whole family out there, and we’ll stay for 2 weeks. We could have stayed at the Ronald Macdonald House for free, and we chose not to. I am either going to be at the hospital with Cooper, or hiding in a 2 bedroom apartment we’ve rented. I’ll pretend to be a normal mom hanging out in Delaware for a couple weeks. I plan to work for a couple hours a day while we’re there – mainly for a sense of normalcy, and to keep my mind (and inbox!) from imploding. Brian will work too. Campbell is too much of a support to Cooper to leave her home. We’re bringing my mom. Her help with Campbell, Cooper and keeping us moving will be invaluable during this time. These are the choices we’ve made, and they’re costly. We are ready to sacrifice to afford this journey.

Friends and family ask, “How can I help during this time?”

  • Pray for us. Pray for healing, strength, grace, patience and creativity in entertaining Cooper. I am partially terrified of Cooper’s reaction to being immobile for seven weeks. He is such an active kid. He LOVES sports – hockey, soccer, basketball, baseball, riding his bike. My worst fear is that he falls into some sort of depression because he can’t do the things he loves. But at the same time I have faith that Cooper will show US the way. I think he’ll show us what he can and can’t do, and we’ll learn together what fun he CAN and WILL have this summer. I’m willing to load him up and take him and his reclining wheelchair to all sorts of sporting events, museums and the zoo.
  • I hope visits from friends can entertain him and cheer him up. But, I am nervous that Cooper’s new condition will make him embarrassed and not want visitors.
  • I’m sure we’ll have a sign up to bring meals for our family when we return home, and I’ll share that when it happens.
  • Check out our registry. If that’s how you’d like to help, we thank you from the bottom of our hearts. Feel free to share it with your friends/family/social media. I swallowed a ton of pride to put it together and share it. Today we were denied by an organization that “provides children and their families free flights to distant, specialized care and valuable second opinions” because we make too much money. It felt like a slap in the face. We work our asses off to provide for our family. I work my ass off in advocacy, fundraising and volunteering for organizations that can make a difference in the lives of families like ours. At the same time, I understand need based awards. Why am I so mad/sad/insulted? Maybe I should put my therapist bills as an item on the registry too!? (In retrospect, I’ve determined I’m so upset because of all the time I spent on the application.) In other news, we applied for medical travel assistance from the MPS Society, and their award is not contingent on income. We are very appreciative of the Society’s support financially (if it get’s approved), the valuable medical information we’ve learned over our years as members, as well as the connections we’ve made who are helping us hold it together and make decisions during this time.

Bringing it back to now – Cooper knows he’ll be in a wheelchair for a majority of this summer, but he doesn’t know the extent of the cast and his immobility. We’ll share the details with him closer to surgery time. No reason for him to get all worked up about it – like me.

Anyway – I’ve shared all this because if I’m asking for money, I want to be transparent. This is where we are. We’re ready to foot the bill because of the choices we’ve made. But if you want to help financially, I am humbled and we are very appreciative.

I’ve been fundraising for different things for the past 10 years, when is it OUR turn? Today.

Reflecting on Rare Disease Day on Capitol Hill

This last February, I participated in Rare Disease Day on Capitol Hill. For Rare Disease Day – February 29th (the RAREST day of the year or the last day in February), rare disease advocates visit their legislators asking for NIH funding, we asked for MPS related language in the Appropriations Bill, and voiced our support of the OPEN ACT. This was my second trip to DC to participate in Rare Disease Day on Capitol Hill. It was logistically easier than the first time, but the second time provided emotional challenges I didn’t expect.

After my appointments with my legislators, I aimlessly wandered around the park outside the Capitol. I had done everything I came to do. I knew I wanted to take the following photo, and it surprised me that I had to choke back tears when I pulled out my “I advocate for #SuperCooper” sign.

I stalked a couple of older gentlemen lingering in front of the Capitol, and judging from one of the guys’ Wyoming baseball cap, figured they’d be friendly and help in my quest for a photo. Turns out one of them lived in Littleton and went to my rival high school. Small world.

This was my first take of the “I advocate for #SuperCooper” photo. Photo credit to the Wyoming guy and the Littleton guy, who should not be in charge of tourist photos, as evident by the landscape crew who appear to be standing on my head.

After parting ways with my photographers, knowing I would take a better photo later, I put my phone away and just stood there, dumbfounded. The tears were back, in full force. What was this emotion? Was I proud? Sad it’s over? Missing my family? In an attempt to clear my head, I aimlessly walked some more.

I’m a glass half full person, always have been. Telling our story – Cooper’s story, every time – it takes me back to reality. “Cooper is suffering from a rare, progressive, life limiting disease.” This is what I told every legislator I met with. As I see the other person’s face fall when I describe my 5 year old’s pain, and what is happening to his organs and his skeletal system, I bring them back up with, “He’s the biggest sports fan I’ve ever seen”. I regale them with tales of playing football, hockey and baseball in the hospital’s hallways on infusion day. Then I move on to how we are blessed that Cooper’s disease is one of the 5% of rare diseases that have a treatment. And I have faith the treatment is helping his organs. We’ll address the skeletal issues with big, scary surgeries. But we’ve still got Cooper, and he’s loving life. So I leave the legislators on a high note, because that’s who I am.

On this trip, I had time to sit and connect with parents who aren’t so different than I, but their son or daughter can’t play sports anymore, or is fighting for their life, or has gained their angel wings. The reality is back, and it can’t be fixed by a quick change of subject to Cooper’s sports craze. It’s amazing and inspirational to see the light that these parents bring.

In sharing with the other parents, we were often surprised when we heard they had OTHER kids! Unaffected kids. And then we cried together over the guilt we felt for overlooking the unaffected sibling. I am certain those siblings are going to be fine. Dealing with a rare disease brother or sister has given them a skill set that life doesn’t usually hand out.

I tried to digest all these thoughts as I wandered through the park. I realized that in order to get what we need for Cooper, and others like him, I must strip away the smiley emoticons, and remember the terror of diagnosis. I must share the tragedy of a rare disease. I need to be real. And the simple motion of pulling the sign out of my purse and reading the words made it all very real again.

I advocate for Cooper. I advocate for MPS families. I advocate for Rare Disease.

Photo credit: young lady who was snapping selfies and complimented me on my tennis shoes (that I have cropped out of the photo)

So for life in general, the optimist can come out and we move forward in a happy place. But when the medical decisions get difficult, when we need help from our elected officials, and when we work on how to support our MPS families, I know what the truth is, and how to address it.