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Mitochondrial Disease Awareness Week 2017

Every single day is mitochondrial disease awareness day for our family, but it just so happens that global mitochondrial disease awareness is celebrated annually during the third week of September. This year, Mitochondrial Disease Awareness Week is September 17-23.

Every year for the last four, we’ve tried to do something a little more to help spread awareness throughout our community and beyond by requesting Kentucky’s Governor to issue a Mitochondrial Disease Awareness Week proclamation, writing this article for The Mighty Publication, What is Mitochondrial Disease? An Explanation for Non-Scientists, selling t-shirts with our recognizable #Hope4KB hashtag, and sharing #Hope4KB photos people send us from around the globe.

Screen Shot 2017-09-01 at 10.22.43 AMThis year, Dave has been invited by the United Mitochondrial Disease Foundation (UMDF) to lead a webinar called “Advocating In Your State,” during which he’ll provide helpful insight into how we passed the Kentucky ‘Mito Cocktail’ law as well as ways to help others try the same in their own state. This webinar is scheduled for September 20, 2017, during Mitochondrial Disease Awareness Week. Interested participants can register with the UMDF here.

Some of you may have noticed that Katherine’s therapy trike riding video is becoming a big hit on the Internet. Please send us any links or videos of it being shared. Every time it’s shared and the words ‘mitochondrial disease’ are mentioned, she is spreading more awareness.

Here are a few links we’ve seen so far:

Right This Minute (Viral video show)

Nieuwsblad (Belgian newspaper)

We will be sharing more awareness resources over on our Facebook page Hope for Katherine Belle this month, so look for our posts to read and share.

Ways To Help Us Raise Awareness

1. Share Katherine’s Facebook page, Hope for Katherine Belle.

2. Share the link to our non-profit (NUBPL Foundation) Facebook page, NUBPL.org.

3. Send us your #Hope4KB photos by posting them to Katherine’s Facebook page. We really want to see YOU and love adding these photos to our ever growing album. Green is the color for the mitochondrial disease awareness ribbon. This is a FREE and fun way to bring awareness to mitochondrial disease and #Hope4KB, so make a sign, snap a photo, and share it with us. And ask friends to consider doing the same. We spread awareness by talking about it with others – tell people about Katherine and her story so you can help put a real face to this horrible disease.

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Arabella, Making Memories for Arabella
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Alex and Blue, Alex and Blue Fighting Mito Together

4. Add a Mitochondrial Disease Awareness photo frame to your Facebook profile picture to let everyone know about it being awareness week. Here’s an example of one we used, which you can get by clicking here:

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5. Make a tax-deductible donation to support mitochondrial disease research and fund treatments/cures (there are currently ZERO FDA approved treatments for Mitochondrial Disease): Katherine Belle Mitochondrial Disease Research Fund at the Children’s Hospital of Philadelphia.

6. Katherine has made it on the EllenNation website (The Ellen Degeneres Show). Register, vote, comment, and share (NOTE: You can only vote once overall – voting more than once will result in a negative vote). Click here to vote for Katherine Belle and raise awareness for mitochondrial disease.

7. Share this blog post with your friends and family.

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Katherine Belle Walking, Age 6

Here’s a short video of Katherine’s walking progress since March 2017. We will keep you updated with any future progress. As for a medical update, she started the extension phase of the EPI-743 clinical trial in February 2017. She’s scheduled for another MRI in October to find out if the atrophy of her cerebellum continues to worsen. Your prayers are appreciated.

 

 

Five

If you’ve followed along since the beginning, you know the significance of these numbers.

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In past years, Katherine’s birthdays have been bittersweet, especially her third birthday.

Three:

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Unbeknownst to me when I ordered it, this birthday crown is clever and cost efficient. Instead of buying a new one every year, I can use the same one and just add a new number…you get the idea. Unfortunately, this little crown brought so many tears. Will she get to use every number? Please let her use all of these numbers.

Four:

Looking back, we realize that every prior birthday has greeted us with worries. By her first birthday, we knew something was wrong; our expectation that she would walk prior to turning one proved untrue and her motor development had stalled. Our nagging worry at one was a gut wrenching terror by two; she still was not walking. On her third birthday, we were living under a death sentence and the day was a bittersweet reminder that we probably had few such occasions left…Today, we have a new – an accurate – diagnosis, NUBPL, Mitochondrial Complex 1, and a new hope. This is a happy day and one of many more to come.

As I carefully placed those five pink and purple candles on top of her cake, a sense of relief washed over me. The haunting statistic that “30% of children with rare and genetic diseases will not live to see their fifth birthday” is now behind us. Yes, there are many struggles ahead, but it’s an indescribable moment to see those happy and beautiful sparkling eyes glowing in the light of five birthday candles.

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Soon after Katherine’s (mis) diagnosis in 2013, I wrote the following:

I do not know what tomorrow brings. None of us do. I believe in science, prayers, hard work, positive thought, and the healing power of love. Each day I share my photographs with friends and family and tell them a story that does not always require words, and that sometimes cannot be expressed with them. It is a story of faith, hope, love, and determination. As we continue ahead on our journey toward a diagnosis, I see a brave and thriving girl who is progressing, not regressing.  I see a happy and joyful child who meets every obstacle or challenge with the biggest smile and the most positive attitude. I see a future with many more photographs of accomplishments, milestones, and laughter. In all of my pictures, I see faith, hope and love. Above all, I see an abundance of love.

I have cried many tears in the last three years from witnessing the physical decline and death of numerous children with rare diseases we’ve met through social media. Instead of planning birthday party celebrations and school graduations, I have watched families plan funerals and suffer more than any human ever should.

As we continue ahead beyond this fifth birthday milestone, my own words lead me into the next chapter:

The past few years have been excruciatingly painful and tough, but I have learned a very valuable lesson: You never know what the next second of your life will bring.  My daughter guides me daily and reminds me that each moment is precious. Each day is a gift. She has taught me the significance of the quote, “We do not remember days, we remember moments.”  I have learned to enjoy and live in the present because it truly is the only moment that matters.

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Her Knight Father-Daughter Dance

Lexington has a father-daughter dance organized by the Her Knight organization. I took Katherine Belle to our second such dance this past Saturday.  Here is a little update on our date:

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Katherine’s dress was beautiful. Glenda somehow managed to take pictures of her in it, looking serene and regal.  The truth was much different. She was worked up and maniacal. These pictures were somehow captured mid-action at precisely the right time to make them look posed. In fact, in my favorite photo below, you can see her left hand clutching her dress to pull it up to rub her face.  Yet, somehow, my wife caught her looking calm, mid yank.

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After she was dressed, she looked at herself in the mirror and said “I’m a Princess!”  Yes, you are indeed.

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Katherine is a very shy little girl, much like her parents.  Noise and commotion make her withdraw all the more.  As a result, when people came up to talk to her at the dance, she would not talk back.  At best, she would smile.  Then, when they left, she would talk about them non-stop. This happened several times, as we met several dads and volunteers who knew Katherine from our blog.  I loved seeing them and them introducing their daughters to Katherine.  Katherine enjoyed this as well. For example, after meeting a dad and daughter in line for photographs, Katherine commented “I really am a famous princess!” because they recognized her.  She would not talk much while eating at our table or in line, but several fathers and their daughters made a really positive impression on her.

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Katherine and I spent about an hour of the dance with her dragging me around.  I held her hands from the back, while she “walked.”  She would periodically hop (with me boosting her in the air), which is her version of dancing.  This was really fun for her, as she loved the way her dress puffed up when she jumped. She often squealed when we did this.  She also had a head bobbing, stomping move that would be more at home in a mosh pit than a daddy daughter dance, but, hey, it was fun for her.

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She also loved the Chik-fil-a chicken nuggets and the cookies, but not so much the Chik-fil-a cow mascots. The stuffed ones were okay, but the life-sized moving ones were still scary, despite a recent trip to Disney to see similar characters.  In fact, after an hour of dancing, our evening ended abruptly after one of the cows approached her too closely.  She demanded an immediate exit – well, she delayed long enough to grab a cookie.

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I want to thank Her Knight, and Amanda Bledsoe in particular, for putting on such a great event.  You truly made Katherine’s day.  Mine even more.  Katherine spent all morning Sunday telling her dolls she was “Princess Katherine Belle” and making them “knights.”

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Be Mine

IMG_4835Earlier this week I pulled out a few Valentine’s Day decorations and found Katherine’s mail bag from her daycare days.  I saved the few cards she received (she was only there for two years).  Looking through them made me sad because she isn’t currently in school (we are planning to send her next year) and doesn’t have a peer group.  She makes cards for her therapists and relatives, but she really doesn’t receive any.  IMG_4746IMG_7537Who wouldn’t want this girl to be their Valentine?
IMG_4940Let’s show Katherine Belle how much she’s loved.  She LOVES Valentine’s Day.  Let’s shower her with love.

IMG_4758Xoxo,

Glenda & Dave

#Hope4KB

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I like a challenge, especially when the challenge is for a good cause. What is #Hope4KB?

  1. #Hope4KB is a T-shirt campaign designed to raise awareness for rare diseases around the world through social media (KB is our daughter, Katherine Belle, a three-year-old from Lexington, KY, who is battling an unknown, progressive rare disease);
  2. You purchase your #HopeforKB shirt from Print My Threads here;
  3. Orders will be collected through March 1st. Wear on Rare Disease Day on February 28, 2015 (only orders placed by February 18th will arrive for Rare Disease Day, but we want you to wear this shirt all the time!) ;
  4. Take a picture of yourself and/or family and friends wearing your #Hope4KB shirt and share it on your social media accounts, i.e. Facebook, Instagram, Twitter, etc. with #Hope4KB; and
  5. The goal is to BREAK. THE. INTERNET.

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Ellen did it.  Kim Kardashian did it. It happened with the ALS #IceBucketChallenge – Let’s do it with #Hope4KB! Not to mention these are the softest, most comfortable American Apparel tri-blend short sleeve track shirts.  Trust me, you’ll be wearing this shirt LONG after February 28, 2015. (Psst…you can still help even if you don’t have any social media accounts – this campaign is for everybody!  Simply take a picture and send it to me at gcmccoy1@aol.com and I’ll make sure it’s shared!) *Proceeds will benefit Katherine Belle and Katie Webb Kneisley. (Click here to read her story.)

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A Magical Vacation

Laughter is timeless, imagination has no age, and dreams are forever.  
Walt Disney

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IMG_7348After working hard on a brief from December through early January, the time came for a much-needed break. Fortunately, this aligned with availability at our friends’ condo in Sarasota and while Glenda’s mom was in Wildwood, Florida.

Sandwiched between these two locations is Disney World. We are “wish-eligible” at Make-a-Wish and similar wish-granting organizations and have wondered whether Disney would be a good place to use our one wish for Katherine. With her sensory processing issues, we did not know if she would enjoy the experience. So, we decided to splurge for two park days to see in between Sarasota and Wildwood. I’m glad we did. Katherine really enjoyed the trip.

Glenda and I have decided to give you our top 10 moments on our Sarasota-Disney-Wildwood trip. We are not looking at one another’s list, so these may overlap. They may not. Here are mine, in chronological order:

  1. Walking from Sarasota to St. Armand’s key on our first day, in the beautiful 70-degree weather (leaving behind frost at home), eating lunch and gelato outside, and then walking back;IMG_4654IMG_4134IMG_4138IMG_5331IMG_5342IMG_5279IMG_5270
  2. Building Katherine a “bouncy castle” out of blow-up mattresses at the condo in Sarasota, and her laughter playing inside of it;IMG_5606
  3. Putting on a “puppet show” with Katherine’s stuffed animals from outside the “bouncy castle”;IMG_4246
  4. After learning of Katherine’s diagnosis, the concierge at the Disney resort booking reservation times for us at the rides we wanted to do, and then bringing her a stuffed Minnie Mouse doll. Well-played Disney, well-played;IMG_4403
  5. After running out to get something from the gift shop, returning to the room our first night at Disney to hear Katherine exclaim “Look Daddy, I can walk!” Followed by her letting go of the sides of her pack-and-play and taking a very good step by herself. She then showed mommy another step. While she cannot walk on her own, these steps are the best I’ve ever seen her take and her excitement at “being able to walk” was priceless. Magic Kingdom, indeed;
  6. Taking her on Dumbo as her first ride, then tentatively waiting to hear whether she liked it. Her exclamation, “play another game,” meant “yes”;IMG_6351IMG_6335
  7. Watching her slowly come to love the characters. She met Cinderella, Rapunzel, Belle, Ariel, Donald Duck, Goofy, Mickey, Daisy, Minnie (from a distance), Chip and Dale and some monkey-thing from the Lion King. Goofy and the monkey-thing frightened her – though she has a Goofy obsession. After being tentative, she grew to like them. She still held Glenda’s hand while meeting the animal characters, a separate favorite thing for me;IMG_6569IMG_6524
  8. Dancing with her in her princess dress while waiting for a table at a restaurant, while she made her dress puff out while jumping and twirling (with my assistance) only to realize that the entire restaurant was set up to look out the large windows over the lake behind us. We were the floor show;IMG_7392
  9. Looking at all the sleeping children and zombie-fied adults waiting for the bus back to the hotel after the fireworks, with the only spark of life in the entire line being our little KB, after 12 hours in two parks and no nap, still jumping up and down, screaming “Jump! Jump! Fireworks! Jump!” Boy were my arms tired; IMG_4557
  10. Listening to Katherine sing along with her Mickey’s Clubhouse DVDs on the ride home.
    (Ok, I have to give a couple more, sorry Glenda):
  1. Watching Katherine crawl-chase Glenda’s mom’s dog, Joey, to pet, kiss and play with him. Only last year, she was still physically shaking in fear at the sight of a dog;
  2. During a silly spat with Glenda on our last night in Wildwood, having Katherine say, in her best Glenda voice, “Calm down, Dave. Just calm down” – I honestly wasn’t “not calm” just a little animated – after laughing and sitting down and re-assuring her that I was ok and it was silly, and reminding her to always call me daddy (she only calls me “Dave” when she is imitating mommy), having her hug and kiss me and ask “does that make you not mad, daddy?” After answering “yes,” having her sit thinking for a minute, grin and then ram her toy rabbit, Bibi, in my face, then ask “Does that make you mad again?”;
  3. Watching KB bounce around singing “hot dog, hot dog, hot diggety dog”;
  4. After leaving our meeting with mermaid Ariel, hearing her remark that she was wearing the mermaid’s dress; andIMG_7297
  5. Being covered in glitter from carrying my little princess all over the park. Who knew I look fantastic in green glitter?

    Glenda’s top 10 moments, in no particular order:

  1. Our friends’ condo in Sarasota is a pink Spanish style built in the 1920s.  When we arrived, Katherine excitedly pointed to the condo, exclaiming, “We’re staying in a pink hotel!”  She talked about the ‘pink hotel’ the entire time;IMG_4149IMG_5594IMG_4109
  2. Katherine watching Mickey Mouse Clubhouse DVDs on the trip and knowing all the songs by the time we got home.  This was really a first for her in terms of trying to sing along. Hearing her sing, “hot dog, hot dog, hot diggity dog” is priceless;
  3. Riding “It’s a Small World” at Disney. It took me back to my own first Disney experience as a child.  I loved watching her eyes light up with delight.  When it ended she exclaimed,  “ride again!”  We did.  She loved it;IMG_6431IMG_6451IMG_6459
  4. Shortly after arriving at our Disney hotel, Dave asked the concierge about getting a handicap pass for our stroller.  Not only did he proceed to book everything we wanted to do in advance and give us guidance on everything we needed, but he showed up at our door 30 minutes later with a Minnie Mouse doll for KB.  As he handed it to me he said, “we hope your daughter has a magical stay at Disney”; IMG_4267
  5. I knew that I wanted her visit with Ariel to be extra-special.  We decided to take her to a shop to pick out a new dress and have glitter sprinkled in her hair.  Ariel was so excited to see that KB was dressed like her and made the visit memorable for all of us.  As I was taking photographs I saw the look of pure joy on KB’s face .  That moment brought tears to my eyes and a smile to my face.  Yes, this was where we needed to be at this moment.  As we pushed her away in her stroller, she looked at her dress and said, “This dress is really cute. I am a mermaid”;  IMG_7253IMG_7202IMG_7246
  6. Bibi was with us everywhere we went and got to enjoy all the sights and sounds, even getting a little glitter on her head;IMG_6801
  7. Seeing Dave covered in glitter from head to toe from carrying and dancing with his princess;IMG_6779
  8. Seeing Dave and KB dancing together in her beautiful princess gowns;IMG_4563IMG_6488
  9. We took her to a character breakfast even though we knew she might be afraid of life-size characters.  She was scared but we told them she just wanted to wave so they didn’t get too close.  By the time Daisy Duck came by she was less afraid and would reach out to hold my hand for reassurance.  It was very sweet how she held my hand and also very brave for someone who was completely over-stimulated; andIMG_4575
  10. Seeing Disney through the eyes of my daughter. Sometimes it’s best to jump in the car and drive to Florida, in the direction of Disney, with no particular plans but to feel sunshine on your face, eat ice cream, and laugh. As Disney himself said, “Adults are only kids grown up, anyway.”  After a very tough year of being more grown-up than I’ve ever imagined, it was fun to feel like a child again, if only for a few days.IMG_6478IMG_6372IMG_6378IMG_7273IMG_7179IMG_5836IMG_5436IMG_4434IMG_4576IMG_6130IMG_6156IMG_4164