Caudal Regression Syndrome

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Caudal Regression Syndrome
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    Community Voices

    Hello mighties, I need your advice if possible direct them to my inbox

    I'm Alex from Germany
    I'm a private contractor and I have my own little engineering company.
    2days ago a one of my staff abused a lady sexually and after much investigation I found out that's my stuff was wrong for assaulting and abusing the young lady I had to lock him up in the police cell and offer his salary to the family of the lady he abused but some people said I was too harsh on my staff
    I shared this here to know your opinions

    #Abuse #ChildAbuse #SexualAbuseSurvivors #Dementia #Depression #CongestiveHeartFailure #KidneyDisease #SexualDysfunction #SocialAnxiety #Anxiety #HIVAIDS #SickleCellAnemia #phobias #CaudalRegressionSyndrome

    16 people are talking about this
    Paul Eiche

    To the People Who Park 'Just for a Minute' Blocking Accessible Parking

    We went out to eat the other night. We parked, as we usually do, in the handicap spot. Nothing unusual there. As we left the restaurant, we found a car parked right in the way of the loading zone of one of the handicap spots. Not only that, but this particular area also served as the pathway for where the sidewalk turns into a ramp. Because the car was right in the way, I gently bumped my daughter’s wheelchair down the curb. Some curbs are large enough where I actually have to guide her backwards; this one was shallow enough where she could go forward. As we went around the car, I saw there were people in both, the driver’s and front passenger’s seats. I tried to find the words for the frustration and anger I was feeling, but my wife found her’s first. “You can’t park here. You’re right in the way of the ramp, making it very difficult for people in a wheelchair.” Like, say, this little girl who is in a wheelchair. “I was just here for a minute. The drive through messed up my food.” My wife replied, “It doesn’t matter. You’re in the way for people who need to use that ramp.” “Whatever, shut up!” And with that, they drove off. Obviously, the lady who insisted that we “shut up” and not advocate for our daughter’s accessibility needs, does not read The Mighty. Nevertheless, I am at least going to address her mindset, if not her. Disability parking spots, ramps and marked off loading zones are not there for quick stops. They’re not there as reserved areas for everyone’s convenience. They’re there for people who need them. The time may come when you, too, will have need of them, and then you’ll find yourself on the other side. My daughter was born disabled. Most children, by contrast, are not. But with age, bodies will deteriorate; it’s simply the way of things. Having lived so long, they, like so many before them, will likely need assistive devices — even if just a cane. And now they will be on the other side. But what if, up until that point, they’ve been dismissive of handicap spots? Accessible bathroom stalls? Ramps and handrails? What if tragedy strikes? An accident, a birth defect, even something like a heart attack or stroke? What if they, or a loved one, suddenly finds themselves disabled? Can they so suddenly demand that they and their newfound needs be respected when all their lives, they themselves did not respect others and others’ needs? I beg you, dear reader, do not let it come to that. Do not wait until accessibility needs affect you personally. Show respect and love to others who require more than you do, and lead your children (or nephews and nieces, grandchildren, or even strangers) by example. And finally, we will not shut up. We will continue to advocate for our daughter, just as we encourage her to advocate for herself. Webelieve accessibility should serve everyone as equitably as possible, and I hope you believe it, too. This was originally published on . We want to hear your story. Become a Mighty contributor here . Getty image by CarlKeyes

    Paul Eiche

    My Daughter Pushed a Grocery Cart and Wheeled Herself Independently

    While on a trip to the store, my daughter Namine got a boost of self-confidence. Our local Pick ‘N Save has little shopping carts. They have long poles attached, with a little flag at the top that says something like, “Little Shopper in Training.” They’re a little wobbly, but other than that, they’re perfect for introducing your child to pushing a shopping cart. And as Namine found out, they’re also perfect for teaching one-handed wheelchair control. When we got into the store, Namine saw the little carts and wanted to push one. Thinking she’d have too hard of a time I said, “No, she’ll need both hands to wheel.” My wife Jessica responded, “Why don’t you push her wheelchair, and she can push the cart?” In other words, stop being a party pooper.   I swear I’m not usually a killjoy — and I like to think I encourage Namine to do as much as she can on her own — but I guess I was really determined to make a fool of myself this time. Jessica reminded me sometimes we need to help out, and that’s an important lesson too: it’s OK to ask for help. Sometimes, as it was in this case, it’s that very help that will inspire going further on your own. So I extended Namine’s wheelchair handles and pushed her, while she pushed the cart. It took her a little bit to get used to the way it handled. I mentioned it was top-heavy; there were a few times where Namine almost tipped it over, but she recovered nicely and it never spilled. After a while, Namine decided she’d had enough of being pushed around. She was determined to wheel herself and push the cart. And she did just that. The turns were the hardest, but Namine kept up with us even with a cart full of macaroni and cheese (white cheddar and shells, her favorite). I think it’s pretty cool Pick ‘N Save has these little carts for little shoppers. It was just a happy coincidence they’re just the right height for Namine in her wheelchair, but being able to wheel herself and push her own cart full of groceries was a great opportunity in problem solving, and a fantastic confidence-booster. Follow this journey at We want to hear your story. Become a Mighty contributor here .

    Paul Eiche

    Why I'm Thankful for Anita's Dance Center

    It’s easy to take what we have for granted. As we approach Thanksgiving, I want to draw special attention to the dance studio where my daughter Namine, who has caudal regression syndrome and other disabilities, takes ballet, jazz, and tap lessons. Anita’s Dance Center does not advertise itself as catering to disabled individuals. Yet, when we were searching for a place where Namine could take dance lessons, it was the only place willing to accommodate her needs. This was back in 2013. Namine’s participation in ballet — which was the only class she took, at the time — was limited to sitting in her wheelchair and scooting on the floor. Nevertheless, Namine’s teacher was supportive. Namine took a break from dance for a few years. She was involved with baseball and basketball, and while she loves them, she missed dance. It was, in a way, her first love. We were not very surprised, then, when she asked if she could take dance class once more. The new class was actually a trio of classes: tap, ballet, and jazz, in that order. This time around, instead of staying in her wheelchair, Namine wanted to try dancing in her walker. Thinking that tap would be too difficult, Namine participated in ballet and jazz. Like the first time Namine took dance, I sat through the class in case she needed help. Unlike the first time, however, I was the only parent to do so. Namine’s teacher, however, did not mind. As the class went on, Namine became more confident, and asked less of me. By the time the classes ended prior to the recital, I was hardly doing anything at all. And there was no taking a break from dance this time around. Namine wasted no time in telling us she wanted to be in dance again, and this time, she also wanted to take tap. Ever since we signed Namine up for her first class, Anita’s Dance Center has been understanding every step of the way. Namine is thankful she’s been able to continue taking dance; we are thankful for an encouraging dance studio that makes all of its students feel welcome. This story originally appeared on We want to hear your story. Become a Mighty contributor here .

    Paul Eiche

    To the Dad Overwhelmed by His Newborn's Bleak Prognosis

    My daughter, Namine has double-inlet left-ventricle heart defect (DILV) and caudal regression syndrome (CRS). As far as physical limitations go, the latter is certainly the more apparent disability. But as serious as Namine’s conditions are, she’s doing exceedingly well. We were in the grocery store yesterday, and Namine was being her normal hyper self – singing and talking and kicking her legs. I thought to myself, you know, I wish I could write a letter to Jessica and myself when Namine was first born, when we faced the daunting and crushing prospect of a dying child – a disabled child, unable to do anything by herself. It was a time when we were promised nothing but crushed dreams, a time when we faced nothing but dispair. If I could write to that couple and reassure them that God was still watching over them, I would. I think it’s good to reflect, to acknowledge what you have and give thanks for it. So here goes. Dear Paul and Jessica,I’m going to skip right over metaphysical impossibilities and assume you’ll believe every word in this letter. I know I wouldn’t, but hopefully Jessica will. She’s always been the better part of you, Paul. So assuming you trust me, I’ll tell you: I’m you. I’m writing this letter to you from roughly two and a half years in the future. I know you have so many questions, Paul — questions that you will rage at God to answer. Frankly, He won’t. Not yet. He answers our questions and prayer on His own time and for good reason. He loves you, Paul. You, Jessica, and your newborn daughter, Namine. It doesn’t feel like He does, I know. I know it feels like He’s tearing your heart out, because I remember how it felt.I know you think about how Namine couldn’t breathe when she was born. I remember our tears. I remember trying deperately to get through her rushed, frantic baptism. I remember us thinking that surely God wouldn’t let her die so soon. She didn’t die. She didn’t die, but she’s still so fragile. And she needed heart surgery at only 2 weeks old – how unfair. And her legs. I know the doctors have promised that she’ll never move them. So many hopes and dreams you and Jessica had for your little Namine are gone. How unfair, how unfair!You won’t find this out until much, much later, but I’m going to tell you now. You’ll find out from Namine’s cardiologist that the CRS saved her life. Her heart didn’t need to work as hard, sparing her the need for heart surgery right away. Yes, I know she eventually needed the surgery. But it occurred at a time when Namine had had the chance to grow and become stronger. She was able to wait until she was able to survive it. She was alive, Paul, she is alive! And she will grow and become even stronger. You’ll see. You don’t see it now, with so many wires attached to her tiny body, I know, but you’ll see. She will surpass all her doctors’ wildest expectations.I know the trach terrifies you. I know you would never admit it to your wife, Paul, but you should. I should have. Learn from my mistakes, and talk to her. You’ll find out that you share the same fears, and together, you are stronger. It was a lesson hard learned. Put down your fear and your pride, and trust your wife. And both of you, trust in God. He will get you through this. And He will get Namine through this. She’ll have the trach for two years, and I know for you that must seem an eternity. But it’s the past for me, and it seems to have gone by so quickly.There are surgeries Namine will need, and you will feel that each one is worse than the last. You will feel trapped and crushed by the stress it will take on you and your wife, but you will lean on each other, and it will make both of you stronger. It will bring you closer together; together you will go through what will feel sometimes like hell on earth, but you – all three of you – will come out the other side a stronger, closer, more loving family.I’m not going to give you a play-by-play with all the surgeries Namine will need. But trust me when I say that Namine will do just fine. God has her in His almighty hand, and He has carried her through. And those promises the doctors made? Don’t worry. She’s not mentally deficient – far from it. She’s as smart as you could hope for, and she’ll have you on your toes soon enough. She can move her legs just fine, and she’s learning to walk. That has been a particularly hard road, but Namine has come through amazingly well.Paul and Jessica, I want to give you the assurance we never had. Know that all three of you will make it through. It’s not over for us either – Namine still has to get rid of her g-tube, and she has the Fontan Operation coming up probably in the next year or so – but Namine is so much stronger now. She has grown so much.Hug her and kiss her every day. Always, always tell you how much you love you. Both of you. Never take a day for granted.Sincerely,Paul from the futureP.S. Namine loves Batman. Seriously, you should buy her Batman pajamas sooner than I did. This post originally appeared on Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .