My Daughter’s Rare Genetic Disease Taught Us the Meaning of Strength

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Dear Cystinosis,

It’s been about a year and a half since you entered our lives, and I’m still not entirely sure how I feel about you. I will probably never forgive you for choosing to live within my innocent baby girl. She is the most precious thing in my world and does not deserve to have you attempting to destroy her cells, making her sick and forcing her to take so much medicine to keep you under control.

Things haven’t exactly been easy since you first introduced yourself. We’ve had to adjust to a whole new routine of around the clock medications, blood draws and doctor visits. We endured a disastrous week with an NG tube, experienced a lot of heartache and have cleaned up more puke than I could have ever imagined.

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You’ve opened our eyes to the rare genetic disease world and all the struggles that come with it. Whether it’s fighting with insurance companies over expensive medications they’ve never heard of, advocating for the right to drugs that are used elsewhere in the world but not approved in our country or struggling with the decision to try for another child knowing there’s a one in four chance they’ll also have to live with you — you’ve made us realize life is unnecessarily hard for those who struggle enough already.

However, I think you chose the wrong family to mess with. At just 2 years old, my daughter has proven she will not let you control her life or stop her from achieving any of her goals. The strength and determination she’s shown is beyond anything I would’ve imagined in such a little person.

We are in awe of how rarely she lets you get her down. She loves life and has the most beautiful smile we’ve ever seen. Her strong will inspires us to do everything we can to ensure you cause as little damage as possible. We advocate on her behalf and let her know there is nothing that can hold her back. We make sure her love for life continues by surrounding her with her loving and supportive friends and family.

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Finally, I need to thank you. Thank you for you showing me my daughter’s incredible strength. I know her future will be bright because of how hard she works. Thank you for introducing us to some of the most amazing and supportive families who also live with your presence. The cystinosis community is strong and determined to fundraise and raise awareness until you become a thing of the past.

Begrudgingly, I must thank you for being one of the 5 percent of rare genetic diseases with FDA approved medications. As much as we complain, we are forever grateful you can be managed. To know my daughter can still live a relatively normal, healthy life well into adulthood is by far the greatest gift you’ve given us since we first heard your name.

Although I’m still stuck in this love/hate relationship with you, I think I’m going to take a page from my daughter’s book for now and choose to not let you get me down, either.

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Follow Elsie’s journey on Elsinosis: Living with Cystinosis.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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A Message for My Daughter’s Tuberous Sclerosis

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blogger-image--394078677 Dear (not so dear) Tuberous Sclerosis,

I despise you.

You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run far away. I still feel ashamed when I think of those fleeting thoughts.

I’ve never been faced with a problem I couldn’t fix or at least attempt to fix. You, however, are a different creature. I can’t fix you or your damaging effects that have taken home within my daughter’s innocent body.

As I lay my body on my daughter, attempting to restrain her for an EEG, I feel nothing but hate for you. As each tear falls from her face, I carry more and more anger. Within those moments you make me want to give up. I want to throw my hands in the air and wave the white flag, surrendering ourselves to your overpowering existence.

But then my daughter, who has been your prey, shows her amazing strength and cracks a smile. All of a sudden the anger, pain and grief leave the room. You can attack her from all sides, and she still has the ability to show her strength. She is stronger than you. Which makes me stronger than you. Her smile returns my strength and makes me once again renewed and ready to tackle whatever you throw our way.

You will not defeat us. We will not give you that power. We will fight for our daughter and the thousands of others who you’ve attacked.

You may be a part of our life, but we refuse to be defined by you.

You are messing with the wrong family. We won’t go down without a fight.

Sincerely,
The Lens Family

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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You’re Frustrating, Crohn’s Disease, But I Can Thank You for One Thing

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Crohn’s, I hope you’re listening.

I’m a newlywed and have missed out on so much of my “honeymoon phase” with my husband. We still have yet to take a legitimate honeymoon. I’ve had to cancel travel plans. I’ve missed parties and celebrations. I had to temporarily give up work while I heal. I’ve gotten by with fibromyalgia since 2006, pushing through and resting when I needed to but more or less functioning and experiencing a “normal” life.

But what is “normal,” really?

Crohn’s, you’ve slapped so many labels on me, it’s hard to remember who I was before you. Your latest label for me is “Patient Zero” — the first documented patient to get mononucleosis while taking cimzia injections. So until we hear from the drug manufacturer, you cannot be treated and will continue to try and control me.

I hate what you’ve done to my energy, my inner light, my social life. I resent the fact you showed up just two months after I married my best friend, Adam.

I had to leave my own bridal shower for the ER. I’ve gone through two colonoscopies and several density scans. I’ve had countless blood tests, visits to Urgent Care and hours wasted in emergency rooms with no success. Through it all, I’ve discovered I have the most amazing support team of friends, family and, most important, a husband who’s given me strength and never once left my side. Because of his strength, spirit and love, you will never make him leave.

You make it so difficult for people to truly understand what a Crohn’s patient goes through. Some days are debilitating enough that it’s hard to make it from the bed to the couch without feeling winded. There are other days where I can push through and maybe get some housework done. Above all else, the simple task of eating (especially during a flare) has become laborsome. The level of pain I experience while trying to digest anything is incomparable to anything I’ve experienced on the pain spectrum. I love food, I love going out for special meals and I love trying new foods and flavors, but that is lost on me for now. You dictate that my breakfast, lunch and dinner is a bottle of Ensure in milk chocolate or vanilla.

Before you, I had all kinds of adventures: traveling, road trips, parties and concerts. When I left Los Angeles for Louisiana in 2011, I drove cross country all by myself and loved every second of it. While I’m thankful to have lived all over and to have had so many amazing experiences, I selfishly resent that I can’t do that anymore. No more spontaneity — everything has to be planned around how I’m feeling, my energy and pain levels, what food will be available and whether or not I can get to a bathroom.

Some days are more difficult than others to maintain a positive attitude. You’ve taxed my immune system, and I now have limitations I’ve never had before. At such a young age. My home life is key — you can’t take that from me. My husband and I enjoy watching movies and TV shows, playing games and laughing at each other. We also have Loki, our kitten who’s brought us both lots of snuggles and love in the face of this frustrating diagnosis. Until I can resume treatment, the love and support of those who truly care for me give me the strength to keep fighting until my next adventure.

For all this, I can thank you for helping me see what is truly important in this life and what not to take for granted.

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 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What Taking Care of My Dad With Alzheimer’s Made Me Realize About Parenting

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I have a 4-year-son and an 84-year-old father. This is a conversation I recently had with one of them:

Me: What did you do yesterday?

Him: Oh, it was terrible.

Me: Why? What happened?

Him: Some people came into my room and took me to a forest. Then they left me there alone.

Me: Wow!

Him: I walked around for hours. I was scared and hungry.

Me: How’d you get back?

Him: Someone found me and took me back home.

If you think the “him” refers to my 4-year-old, you’d be wrong. The conversation was with my agitated 84-year-old father who actually believed this happened to him. I can assure you it did not. My widowed father is a fairly active man for his age. He lives in a nice senior living facility. My son is a healthy, precocious kid. He lives at home and goes to preschool. On the surface, these two people are far more different than similar. My father, for example, was an accomplished physician. My son pretends he’s a pilot. My dad has travelled the world and will eat almost anything. My son likes to play in his room and does not like green beans. My father, however, does have quickly advancing Alzheimer’s disease, and this has created stark similarities between the two of them.

My dad’s short-term memory has become nearly non-existent; his longterm memory is there but getting cloudier by the week, and his cognitive abilities and what was once an extraordinary talent to connect and interact with others has dwindled significantly. As my son has evolved out of toddlerhood, my father has devolved into a sort of “geriatric toddlerhood.” At 4 and 84, they’ve crossed developmental stages, and I’ve been put in the odd and most unexpected position of having to “parent” them simultaneously.

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The simplest explanation or instruction to my father is immediately forgotten. The same question will be asked two or three or 15 times. Rarely a tiny morsel of a conversation will be retained, but more often the slate is wiped clean. My “other child” seems to also suffer from a form of short-term memory loss. If I tell him not to jump on the couch, he will stop. Five minutes later, he will be leaping off the cushions again. My son will latch onto a topic, say, clouds, and ask the same question over and over again even after a thorough and illustrated explanation. “But whyyyyyyy does it rain?” In both cases, I find myself repeating the same response numerous times. With my father, the answers don’t sink in. My son just likes hearing me repeat myself.

One of my greatest joys as a parent is introducing my son to the wonders of the world. The simplest things can elicit the most sincere reactions of awe. I can hold his attention for 30 minutes straight just blowing bubblegum bubbles. My father is equally impressed with life’s innovations. One recent night in our kitchen, he picked up what was to him an odd instrument. He asked me what it was. I looked at him, trying to determine if he was joking and quickly realized he wasn’t. “Dad, that’s a corkscrew. You know, to open bottles,” I said. He marveled at it again, slowly turning and examining it before asking me if it was a new invention. Another time he went on and on about how he’d never tasted the delicious and “exotic” fruit I’d just given him. It was a normal peach.

When my son discovers something new, it’s wonderful to see his imagination blossoming with possibilities. To see a fully-grown, educated and well-travelled man do the same is one of the more heartbreaking things I’ve ever had to witness — even if it was a particularly good peach. I find myself spouting parental clichés a lot these days. Things like “Do you need to pee?” or “Leave that there; it doesn’t belong to you.” Sadly, I say these things to my father as often as I say them to my son. About the time my son figured out how to put on his own underpants, I witnessed my dad struggling to put on a t-shirt. “There are too many holes. I don’t know where to put what” was his matter-of-fact rationalization. On several occasions, I’ve found my dad trying to roll a sweater up his legs, at a loss as to why it wasn’t working. My son does this kind of thing too, but in his case, he’s in on the joke.

I consider one of my main parenting duties to be setting appropriate boundaries and guiding my child towards what’s right and safe. My son now mostly understands that he shouldn’t draw on the walls with markers and that he shouldn’t walk out of the house unaccompanied. Just as my son is gaining common sense, my dad is losing it. In trying to decorate his room with photos and personal artwork, my father glued them directly to the wall, making it impossible to remove them without ripping the drywall. Without supervision, my dad will literally walk away from home and not know how to get back. I’m never sure what disaster I will find after leaving my son or my father unattended. I don’t want to imagine what would happen if I left them alone together.

When our son turned 2 and a half, my wife and I started the hunt for a preschool. At the same time, I was looking for a place where my father could spend some productive daytime hours. We found a great school for my son and a wonderful senior daycare for my dad. Essentially, there was not much difference between the two places. Both were cheerful with excellent staff, and each offered a variety of activities such as crafts and music. Both also offered abundant opportunities to meet and socialize with others. The first day of “school” for each of them was bizarrely similar. I led each by the arm into class. Both were nervous. Both clung close to me, eyes darting around this unfamiliar new landscape as friendly staff approached and greeted us warmly. It took some coaxing, but eventually each let go of my arm and joined the group. Once they did, it was as if they’d been going there for years. Now I get the weekly influx of expressionist artwork from both of them. Both of their art hangs in my home. Every so often, I’m called in for a “Parent/Teacher” conference for my son and a “Your Parent/Teacher” conference for my dad. Both are doing well, enjoy their activities and seem to be quite popular with the other kids.

There are many other examples of this overlap between my dad and my son that nag and keep me on edge. There’s the constant fear that I will lose either of them in a crowd. There’s the effort and oversight it takes to get them dressed or to the bathroom. There are the frustrated outbursts they both have on occasion from their inability to express themselves effectively — my son because he just hasn’t learned enough words and my father because he’s forgotten too many. Lest we forget the anticipatory dread of going out into the world with two people who possess no “thought filter.” I’ve had to explain to my son and my father on more than one occasion why saying that someone is fat or smelly while also standing within earshot of said person is “not OK.” “But they are!” is their unabashed response.

Despite it all, I’ve discovered something valuable and meaningful. This experience with my dad, as stressful and difficult as it has been at times, has profoundly changed me. For a long time, I would find it difficult and annoying to handle my father’s repeated questions. I’d find myself angrily thinking, “Damn it, you were a doctor for %$&#* sake, how can you not know that?” It would make me resentful having to cue and correct my father’s behavior. “Really?! You think the refrigerator is a closet?” My dad’s worsening condition made me incredibly frustrated, angry and bitter. I’d have to resist the urge to yell at him or walk away in utter aggravation. He’d become a child, and I’d become his parent. I hated it. I resented what was happening and, as unfair as it sounds, was starting to resent him as well. Then it hit me. This odd role-reversal made me realize that life is, and forgive the Disney reference here, a circle — or maybe a bell curve, depending on how much of a geek you are. We start at zero, acquire the elements that make us who we are, and then, if we last long enough, it all starts to go away.

This fresh way of thinking about my dad’s condition altered my perception and has impressed upon me that his mental demise isn’t deserving of my anger or resistance. It’s worthy of my patience and understanding. My dad and my son are two sides of life’s coin. Since the onset of my dad’s disease, I’ve had to become increasingly more adept at thinking quickly on my feet to redirect his behavior or adjust his mood. I’ve had to choose patience and humor over frustration and anger in dealing with his missteps and repeated inquiries. I’ve come to understand that it doesn’t help to deal in facts because he has a different sense of reality. I’ve learned that what matters is to address his emotional state and work from there. It’s required constant assessment and an evolving strategy to recognize what actions will work best at any given moment. And therein lies the biggest realization of them all. This is parenting.

All of the techniques and skills I’ve had to develop to take care of my dad are exactly the ones I need to raise my son. Ultimately, becoming a better son to my father has made me a better father to my son. I’m currently at the top of the bell curve I mentioned earlier. From this vantage point, I’m able to see the side I just came up. And, if genetics have anything to say about it, I also see firsthand the side I’m about to head down.

I have two clear jobs. The first is to help my dad reach the end of his path with comfort and dignity. The second is to guide my son on his ascent with wisdom, acceptance and compassion. I want my son to appreciate and remember the kind of father I was to him just as I remember the wonderful father mine was to me. I want him to have the memory of a happy and rich childhood and appreciate the love he has in his life. Could there be a more important achievement for a parent? Providing all of this for my son does have one other selfish upside. I want him to think fondly of me and act with compassion when he’s at the top of his bell curve and I’m trying to hang my pants in the refrigerator for the fifth time.

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18 Sweet Examples of Grandparents and Grandkids Taking Care of Each Other

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Grandparents give the best advice, are always available for a hug and know just what to say to make their grandkids feel better. And when your child has special needs, the additional love and support a grandparent provides can make a huge difference.

Last week, we asked our readers on Facebook to share a moment they’ve witnessed between their child and his or her grandparents. Here are some of your responses.

1. “Our son is highly sensitive to having his hands touched and doesn’t generally allow it, but one day during a walk, he gently placed his hand inside my dad’s hand and walked beside him. It was such a tender moment.” — Kate Sytsma

Kate Sytsma

2. “The look on my mother’s face the first time my son called her ‘Grandma’ when he was 5 years old.” — Genelle Thomas

3. “I think some of the most special moments are some of the simplest, like the sweet hugs and cuddles, or how excited my son gets when he sees his grandparents.” — Anne Wilson

4. “My 20-year-old daughter, Lissy, who has nonverbal autism, functions at about a 2-year-old level. Lissy and her grandma are very close. Here she is saying goodbye to Grandma at the nursing home.” — Shelly Boeve

Shelly Boeve

5. “My 12-year-old son has autism, PTSD and anger management problems. His biggest supporters are his grandma and granddad. They watch every test and come to every tournament they can. When Grandma had to have surgery last year for cancer, she took my son’s karate black belt with her and returned it to him only when she left the hospital.” — Kimberley Hauser

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6. “My 10-year-old holds my mom’s hand to help her when they are walking. If she walks too slowly, he pushes her from behind.” — Sara Garcia Carrillo

7. “My parents came to the hospital to see my newborn son, who has Down syndrome and autism. At that point, we weren’t certain if he would live or die. My parents were old and unable to travel, but they needed to see and hold him. It was and is so precious to me. They have since passed away, but my son is now 16 and is doing just fine.” — Loes van Doorn

8. “I have two sons with special needs. The oldest has nonverbal autism and the youngest has a seizure disorder, is nonverbal and has limited mobility. All of their grandparents have loved them since day one.” — Dana Pedersen

Dana Pedersen

9. “My 2-year-old engaged her poppi in a fast-paced game of ‘mimic my gestures.’ She had him in stitches while he struggled to keep up with her.” — Gretchen Morris

Gretchen Morris

10. “My son looked at his great-grandma’s birthday cake and asked her, ‘GG, were you alive when dinosaurs roamed the earth?’ She hugged him and they had a giggle.” — Jessica Carpenter

11. “When her great-grandmother comes to visit, she runs to her with so much joy and love on her face.” — Jennifer Elizabeth

Jennifer Elizabeth

12. “My daughter loves my parents so much. Whenever we go over to their house, she starts saying ‘teteh’ (Arabic for ‘grandma’) as soon as we reach their street! And whenever she picks up a new word, she’ll repeat it over and over again to my parents who applaud her every single time with the same enthusiastic manner.” — Tala Rifai

Tala Rifai

13. “My 5-year-old son has autism and is mostly nonverbal but has started using simple sentences. Yesterday, when his Papa was holding him, he reached over to Nana and, hugging both grandparents, said, ‘One more hug.'” — Lorie McNabney

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14. “My mom and my son have a special relationship. She babysat him for many years, and he loves to hide her keys from her every time she comes to visit.” — Dawn Rewerts Jenks

15. “My daughter, who has Down syndrome and autism, adored her grandpa. He had a connection with her not many have had with my daughter.” — Liz Esterline Roush

Liz Esterline Roush

16. “My 5-year-old son has spastic diplegia cerebral palsy and wears splints (AFOs). My father had both his legs amputated when I was a little girl and he wears prosthetics. They met for the second time last year, and my son was very excited to see that his grandpa also had to wear things on his legs to help him walk.” — Taryn Morritt Botha

17. “My son loves the Titanic. Anything to do with it. His Paw Paw spends hours with him making shipyards and Titanics and watching YouTube videos. They have such a special bond.” — Toni Baldwin Mabry

18. “Here they are last night at dinner.” — Ellen Russo

Ellen Russo

*Some responses have been edited and shortened.

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10 Lessons I’ve Learned From Having Multiple Sclerosis

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Dear Multiple Sclerosis,

You, my frenemy, suck. You’re a selfish, sneaky, hag that seemed to creep in in the middle of the night and steal so many things I hadn’t even realized yet were dear to me. You’re like the Grinch pilfering children’s Christmas gifts. You plucked my dreams and goals, tossing them away while you made your escape. For a period of time, this crushed me. My soul, my confidence and my drive had all been shattered. I was lost, scared and completely unsure of what to do to get myself back to “good.”

You had an arch enemy though, and he had within himself your kryptonite. My beautiful little boy, his unshakeable spirit, the hope that shone through his innocence began to combat your negativity. When I would wake to his smile and hugs, I knew without question, I was stronger than you. And he, well, without even knowing it, he was stronger than me. As my gait got better, my fine and gross motor skills came back more easily, and my word recall did too. You no longer had a firm grip on me.

I call you my frenemy because, in hindsight, there are lessons I wouldn’t have learned without you entering my life. I mean, shit, I’d like to think there were better ways to learn these things, but if you were the only teaching candidate, then thanks for taking the job.

Some people age without ever learning what’s truly important in life. Some die before they have the chance to be truly happy. You prevented me from meeting that fate. You opened my eyes to certain truth:.

1. Being efficient and particular are great qualities at work. But don’t bring those things home with you; your children and your family deserve the ability to not fit a mold, to not have their own creative breath stifled.

2. Structure is good; it has so many positive effects on us. But winging it and breaking the barriers is where the best memories are formed. Having breakfast for dinner, running outside in your pajamas to dance in the rain with your kids, sleeping in a living room fort for three consecutive nights — these are the things you and they will remember when they reflect on your time together.

3. Talking is amazing; communication is key in the health of any relationship. Listening is the cement that seals the cracks of your foundation when it begins to break. Open your ears and close your mouth.

4. Ask questions, use your imagination. Let your children lead you. Play! Too often we “need to” do dishes, laundry, sweeping first. Unless it’s putting out a fire, it doesn’t need to be done first. Your kids need you first. Always.

5. Tell your kids how much you love them. Stop moving, sit down with them, read, cuddle, kiss their forehead. And then tell them what they mean to you. Take no moment for granted; it truly may not come again.

6. Pray. Pray to whoever. If it makes you feel better, pray and give thanks. It forces you to find the beauty, to acknowledge the good and set aside the bad, even momentarily.

7. Count your blessings, not because you’re luckier than myself or that guy in a wheelchair, that woman missing her arms, those people with cognitive impairments (you’re not) but because all of those blessings are privileges not rights. They’re not guaranteed; they could be taken at any moment.

8. Spend a little time acting like a hippie on acid having a really great trip (just don’t actually do the acid). Meaning, enjoy your senses, the feelings you have when you touch someone’s cheek, kiss your partner, hug a family member, hold your child close and smell their sweet little head. Commit these things to memory. When you need them, they will carry you so much further than you ever could imagine.

9. Smile. Be accepting. Don’t judge. Don’t put up with anything that makes you uncomfortable or causes negative feelings. Recognize those who are meant to be permanent in your life and those who aren’t; be grateful for them regardless. Express your feelings. Let no one walk away not knowing you love them. Advocate. Hug people even when it makes you uncomfortable… especially when it makes you uncomfortable. Stop being greedy, realize how good you have it. Find ways to bring yourself peace; you’re the only one who can do this, no one else can, and no one can fault you for living peacefully.

10. Love. Love with your whole heart.

MS, you’ve taken, but in the absence of the things you stole, more important and even better things were able to shine through. New dreams and goals, a happier existence were all born. So my frenemy, I might hate your guts for showing your rather ugly head, but thank you. For everything.

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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