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Our precious Princess Grimmy lost her battle with MPS-VI on New Year’s Eve, December 31, 2015. We’ve struggled daily trying to figure out a new normal, one that doesn’t revolve around caring for her. Eradicating this disease has become our fight, our mission and our resolve. This past weekend was the National Specialty Show for the Miniature Pinscher Club of America. With the tremendous help and heart of our friend, Marcia Tucker, we were able to address the club members. This is the letter she read to them:

An Open Letter to the Breeders of the MPCA from an MPS-VI Mom

March 8th, 2016

Dear MPCA Breeders;

I bought my first Miniature Pinscher in 1992. He charmed my life for nearly 18 years. The love I had for him urged me to help others, I began rescuing the breed in 1993.  They came from all parts of Florida, shelters and owners. One year alone, 52 Miniature Pinschers came through my private rescue group. This was before the Internet and Social Media! During my 23 year history, I’ve had the pleasure of knowing hundreds of Minpins. Somehow, though, I had never heard of Mucopolysaccharidosis Type VI (MPS-VI). That is, until an exceptional Minpin came into my life a little over 2 years ago.

Grimmy was fortunate to wind up at Seminole County Animal Services where they recognized she was unique and needed special care. Though I’ve officially been out of rescue for years, they called me. I will forever be grateful they did. Upon getting this teeny girl home, it was your own Marcia Tucker who said I should look into MPS-VI. She’d recently seen a presentation on the disease and knew Grimmy exhibited all the signs. Radiographs were taken and sent out to several Veterinarians. All said there was no way the dog was alive.

Puppies born afflicted with this disease rarely survive past the age of 2 and those who do survive that long have a range of medical issues. In order to be born with MPS-VI both parents must be carriers of the MPS gene. Newborn puppies may not show any sign of the disease right away but as the cells become damaged from not being able to get rid of the old mucopolysaccharides, symptoms start to appear. This is why it is crucial to test all potential breeding dogs for the MPS gene.

(The body is continually replacing old cells with new, and to do that, parts of the cells must be broken down and disposed of so that the new parts can be built properly. When a dog has MPS-VI, it has a deficiency of arylsulfatase B, an enzyme that breaks up the mucopolysaccharides so the body can remove them from the cells. The mucopolysaccharides that should have been removed stay in the cells and cause damage over time, as they don’t allow the proper formation of new cells.)

Grimmy’s trachea was displaced with calcified rings surrounding it. Her sternum was a pile of sticks tossed about haphazardly. Her spine was permanently dipped down at the neck. She was unable to raise her head above her shoulders. Her paws resembled flippers and were arched to the inside. She had absolutely no muscles, whatsoever, in her backside. Legge-calve Perthes was suspected but we never took hip/leg radiographs. She could slowly frog walk on her own but rested frequently. Grimmy’s bottom jaw was jutted forward giving her a blunt muzzle. Her nose constantly blew bubbles. Her tongue was oversized and she had thick saliva. It was impossible to age her. Thanks to MPS-VI her corneas were pools of lipid deposits, rendering her blind. Her teeth resembled candy corns. Her breathing was always labored. Ultrasound showed her heart was unexpectedly normal.

A simple DNA test was done through VetNostic Laboratories to confirm if she was affected by MPS-VI. She was. Why did we not euthanize a dog in this condition? I’m sure my husband and I considered it briefly. Despite the obvious struggles, Grimmy’s bright spirit and determination were undeniable. We brought her home knowing it was a Hospice situation but Grimmy had other plans. She was happy, funny, playful, smart, fabulous and loving. Her mangled body could not contain the distinctive charisma we know as being a Minpin! She held her own amongst 3 Australian Cattledogs. She was fearless. She was a miracle. Once I began researching MPS-VI, I quickly learned there is scarcely any information out there. There is certainly none explaining how to graciously LIVE with an MPS-VI dog. For 774 days my life revolved around caring for this dog. Sounds daunting but it wasn’t. Even after seeing a Veterinary Specialist who had only seen one other MPS-VI dog in 30 years, all I could do was feed her, adore her and keep her safe. She showed me how things needed to be done. Every day was an adventure. Every day there were challenges and problems to solve. We figured things out as we went. Every single day was a blessing.

We documented Grimmy’s life and death on Facebook. Though this disease is rare (textbooks only mention it and the MPCA website has only one link referring to it on the Health Information page) I quickly found 12 other MPS-VI dogs on Social Media. How many more are out there? Interestingly, there appears to be a high concentration of them in Southern California. The similarities among the dogs are astonishing. Not only do they all look alike, their personalities are also similar. All have incredibly strong wills to live as normally as possible, in spite of their illness. Their ages varied, the oldest was miraculously 9. A few were purchased as normal looking puppies. All the others were found at shelters. In the 2 years since we became an “MPS-VI family”, 7 of the 13 have died.

Grimmy died exactly as I knew she would. There were countless times she would wake in a panic, unable to breathe. I slept with her cradled in my arm so was always able to calm her down and pat away the saliva choking her. This particular day, 774 days after she claimed my heart, nothing unusual was happening. We were having a great day. Grimmy was doing what she loved doing more than anything, chewing on a chewy stick. One second she was walking, carrying the chewy stick to a different part of the bed. The next second, she was gone. As soon as I grabbed her, I knew. I tried in vain to bring her back but she was gone. As if a candle, that brightest of lights known as Princess Grimmy, was blown out. Poof! Gone. That’s how they’ve all died.

Thanks to Facebook and Instagram, our MPS-VI dogs have not only become a force of Inspiration, they’re also Educating thousands of people. Because of Walter, Tucker, Vader, Charles, Elvis, Horus, Mort, Pan, Scooby, Polly, Tigger, Vinnie and Grimmy, people know the faces of MPS-VI. They saw our dogs live wonderful and full lives despite the fact their own bodies were turning against them. They wept with us as the fatal disease took them. Our MPS-VI dogs are the reason Minpin owners are now getting their dogs tested. And, yes, tests have come back positive for MPS-VI. The answer is ridiculously simple. To eradicate this disease from our beloved breed all you have to do is TEST them prior to breeding!

We have formed a non-profit organization called The MPS Army Foundation. We would love for the MPCA to join us in this fight.  Since the MPCA objective is to encourage and promote quality in the responsible breeding of pure-bred miniature pinschers and to do all possible to bring their natural qualities to perfectionwiping out this devastating disease is certainly a significant part of achieving that. Potential puppy buyers are now asking breeders if they test for MPS-VI. If the answer is no, we urge them to walk away. The 774 days I spent with my MPS-VI dog will always be cherished but no dog need suffer from this disease. I would spare anyone the paralyzing pain of losing one to it.

The Mission of the MPS Army Foundation is to eradicate MPS-VI in dogs through Awareness, Education and DNA Testing, as well as, provide Support for those dogs affected by MPS-VI. We envision a world where MPS-VI is a thing of the past in dogs and, until such a time, all dogs affected by MPS-VI are given the support necessary to have the best life possible.

The MPS Army Foundation will do the following:

  1. To assist with medical bills for the dogs found to have MPS-VI.
  2. To provide funding for breeders to have their dogs tested for MPS-VI.
  3. To send an MPS ARMY Certification for tested dogs that have been found to be clear of the MPS-VI gene.
  4. To provide an “out” for people whose dogs have been found to have MPS-VI, who can no longer provide care for that dog.
  5. To provide an adoption list for people wanting to adopt and care for an MPS-VI dog.
  6. To raise funds for medical research for dogs with MPS-VI.
  7. To provide educational materials to breeders and parents of dogs with MPS-VI.
  8. To provide post mortem assistance to families of dogs with MPS-VI.

On the MPCA Health Information page you list your current concerns as “patellar luxation, cervical disc, legg-calve perthes, epilepsy, thyroid, heart defects and eye problems in varying degrees of severity. ” A Miniature Pinscher affected by MPS-VI has ALL these medical problems and more. If one scrolls down the page to where Legg-Calve-Perthes Disease is discussed there’s a link to PennGen for MPS-VI testing but no explanation or discussion, whatsoever. The fact the specific gene which causes this devastating disease has been discovered and a simple DNA swab test can be done is beyond miraculous.

The AKC has a Breeder of Merit Program certifying that applicable health screens are performed on your breeding stock as recommended by the Parent Club. We at the MPS Army Foundation strongly urge the MPCA to consider adding MPS-VI testing to your breeder recommendations. Together we can fight MPS-VI!

“It takes an Army to win a battle,” and our battle is against MPS-VI in dogs.

Sincerely,

Kathleen Prince / Mom to Grimmy an MPS-VI Dog

Facebook.com/GrimmyLivingwithMPSVI

Member – MPS Army Foundation

For MPS-VI  Help & Information please go to:

Facebook.com/mps.army

For MPS-VI Testing please go to:

http://www.vetnostic.com

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Grumpy Gus

IMG_4565Four years ago, on a cold Christmas Eve, this little dude was picked up by the police as he was walking down a busy road. It’s a miracle they even noticed him as he weighed all of 2 pounds! He had pneumonia and no owner that came looking so the shelter manager took him home to nurse him back to health. It wasn’t going so well. He refused to eat. She called me to see if I’d be willing to give him a try. What trouble could a 2 pound Chihuahua be?

IMG_0036Little Lord HumunGus was not trouble. He was adorable. He was also untouchable. Once he recovered from his illness, his grumpiness came out. DO NOT TOUCH ME. He was a perfect pack dog. Never got run over by the big dogs. Did everything asked. Took treats from hand as gentle as can be. DO NOT TOUCH ME. He appreciated various dog beds and blankets. When not sure if he was in from the yard, I would ask a blanket lump, “Gus, that you?” and would be met with a snarly warning growl. DO NOT TOUCH ME.

Dixxy_and_Gus_IMG_5360He ADORED all his girls. He especially adored old Dixxy Blu. Ages of these rescued animals are always as best an educated guess but still always a guess. We know both were very old. Didn’t stop them from romancing, though! Well… Gus may have thought they were romancing. We don’t even think Dixxy was ever aware he was humping her. But hump her he did. ALL THE TIME. Had to admire the little dude.

IMG_2020We simply let Gus be Gus. It wasn’t easy. Touching him in any way not only risked our own flesh but put him in danger. He’d freak out so bad, snarling, gnashing and trying to get away, he could get hurt. DO NOT TOUCH ME. When he did have to be touched for some reason, a bath for example, thick gloves or a big towel would be used. I learned how to apply the tiniest of muzzles to his adorable face. We’d get done what needed to be done, then he’d be left to his own, as that was all he wanted.

He wasn’t on our radar to be the one we’d be losing. Over the summer he had a dental and all his lab work showed an amazingly healthy old-timer. On Saturday we heard him scream and found him standing under the chair. No one else was even around. I grabbed a towel to pick him up and he felt limp and wasn’t even trying to bite me. This was the beginning of the end for our adorable, grumpy Gus. After the initial scream, he began circling to the right. This went on for 5 days. The only way to stop him circling was to hold him swaddled in a towel like a baby. DO NOT TOUCH ME.CM151128-170112032_20151129062600891Dr. Campbell, Scottie and I tried everything to give him relief and a chance to come out of this. We hoped it was simply a wrenched neck or back. We feared it was a brain lesion. Gus was fighting and trying, too. It was terrible, yet kinda nice that the only way to keep him from circling was to hold him. Though he hated being touched, when wrapped in the towel he would fall fast asleep, even snoring. We were able to touch and even kiss him in these moments. We held him, day and night, nearly 4 full days.

Not being able to fix what’s wrong with one of our babies is frustrating and heartbreaking. But there was no fixing this. No way to make it better. We let him go. We told him he will always be our favorite grumpy, horny old man. I’m figuring he’s already found his favorite gal, Dixxy.

CM150207-125407027_20151203074335042_20151203173713893-picsay“You see there once was a boy and on the street he’d surely die. So the Nighbird took him in and taught him how to Fly.”

(from the song “Nightbird” by Eva Cassidy)

 

CM151027-120510009 This past weekend the state of Florida held it’s first Bear Hunt in over 20 years. The Florida Fish and Wildlife Commission is touting it a great success and are planning for the next massacre. Opponents are still trying to figure out how to stop it. Emotions were running high from both sides. I blew up my own Facebook page with the horrific images of dead Momma Bears and dead Cubs no bigger than Labradors. I felt sick all weekend.

The hunt was called off after two days. The FWC seemed surprised the hunters were so immediately successful at bagging the Bears. A quote I heard from a hunter on the news was, “He just stood there and let me shoot him.” Think about that for a moment. Why would he not run? Bears have been used to seeing humans these past 20 years. Not much “sport” in that.

Another quote from a different hunter was, “You’ve seen what’s been happening North of Orlando… the Bears have been chewing on dogs and chasing women!”

This was the excuse used to start this mess. Bears were attacking people along the Markham Woods Road corridor. It’s true that a handful of people and dogs have had bad encounters over the past couple years. People in danger from Bears still only make up 1% of the calls FWC takes regarding Bears. That 1% statistic has been solid yearly since 1999, according to the FWC website. I work daily in the neighborhoods up and down Markham Woods Road. I have personally had several close sightings of Bears in these neighborhoods. Know what happened? Absolutely nothing. We both went about our business. It infuriates me that yesterday, not two days after everyone was so upset our beautiful black Bears were killed, I still saw trash set out in rickety cans.

It doesn’t take a scientist to deduce the following:

1. Bears are in the neighborhoods because you built them in their woods.

2. Bears are in the neighborhoods because you put trash out they can easily access.

Yesterday when I took the above photo I was in an exclusive, gated neighborhood. This is high dollar real estate. I drove the main drag with homes on both sides. I drove from the front gate to the back. I counted TWO Bear-Proof trash cans! That, my friends, is shameful.

Are you outraged enough to finally get the proper trash cans needed to ensure not only YOUR safety but the safety of our Bears? Lead by example. It’s too late for the over 300 dead but maybe, just maybe, we can be responsible stewards for the ones remaining.
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This blog began as our journey into the horse world began. What a journey it has been! Our “baby” Becca has taken to her new life without missing a beat. She has a new best friend, Catlin. They even take time out to goof around in between the serious training.

Becca & Catlin

Becca & Catlin


Day to day life at our little red barn is fairly routine these days, which is a good thing! We don’t need or want any barn drama. Our herd of 3; Cass, Tanner and Abu are happy and healthy. This picture of Cass epitomizes her health and happiness. She couldn’t be more lovely or more loved.

Lovely Cassidy April

Lovely Cassidy April

Neither could our special Minpin, Grimmy. She’s thriving despite having a devastating genetic disease, Mucopolysaccharidosis Type VI (MPS-VI). She amazes us daily with her feisty attitude and abilities. Scottie and I have always had our home open to hospice pets, giving them a soft place to land before passing on. That’s why we brought her home. She just has no idea anything is wrong with her and she has no plans of leaving us anytime soon. She is adored. She’s also on Facebook where she’s made lots of nice friends. Her daily purpose is to make them smile.

Two of those friends have began a unique fundraiser for not only Grimmy, but the 4 other Minpins who have this disease. We all found one another on Facebook. Having a special needs dog, especially one with such a rare disease involves more frequent tests, scans, special diets, alternative treatments, etc. All the families of these MPS pups strive to give these dogs the most comfortable life possible, for whatever time they have. In the past couple months 2 of our special MPS pups have passed away. Our group was 7 strong, we are now 5.

The friends who organized this fundraiser are independent designers for Origami Owl Custom Jewelry. They’re hosting a special event for the rest of the month where any jewelry purchased will raise money for vetting costs for the MPS pups! The mission of Origami Owl is to be a force for good, to love, to inspire… this has been our mission with Grimmy from the beginning. It’s a match made in Heaven! Go check it out and buy some pretties.

Click the link to go to the event page! MPS-VI Pups Jewelry Bar Fundraiser
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Now A Mare

May 17th, 2015 means our baby is no longer a baby. She’s a mare. And she is a gorgeous mare! Somehow, despite both our immense fears, we raised this baby, Cass and I. Cass knew a whole lot more than me, from the get go. I was there soley for support. We’d only just met 2 months prior, as she lightly stepped off the trailer in the darkness following her 3,000 mile trek from Canada. That night began the best thing I’ve ever done.

That Preakness morning 7 years ago was my very first lesson in listening to my horse. We thought we had it all figured out. The “mare cam” was beautifully lit and set up in her stall. Cass had an audience that averaged about 100 a night watching her from all corners online. We watched and waited. Waited for the signs the baby was coming. The chat room forged friendships and false alarms. I can still feel the knots in my stomach when I think about the anticipation.

I was terrified. What if something went wrong?! What if I had to get in there and pull that baby?! What if my beautiful Fairy Princess of a horse died?! My vet forbade me from anymore youtube clips of horse births. My Dad kept telling, “She knows what she’s doing.” And no truer words were ever spoken. As I arrived at the barn that 17th of May, after 2 full weeks of intense watching of the pot, I immediately sensed something was different. Cass gave me a knowing look. She demanded breakfast. A crowd began gathering around her stall. I was still (and would be for a while) scared of my Fairy Princess. I asked the much more experienced barn owner to go into her stall and check her. She obliged. Two little hooves were attempting to peek out from underneath Cass’s tail! WhooHoo! Cass was way more concerned about finishing breakfast than the fact another being was trying to get out of her belly.

Now comes the listening to my horse part. She finished eating. She looks deep into my face and says, “get me the Hell outta this stall, lady!” That was not in the plan. The camera was attached to the stall. The audience of 100+ had been diligently waiting for this very moment. I was in a panic. The crowd that had gathered were all speaking at once in excitement. I couldn’t even tell what anyone was saying. Except for Cass. I heard her loud and clear. Sigh. I put her halter and rope on and we took our first solo walk from barn to paddock. I’d been too scared to walk her myself before. Not this time. I had to listen to my horse. She wanted and needed out of there. It was going to be she and I against everyone else. Sorry everyone watching online! You won’t be seeing this birth.

The beautiful thing was how exactly right my Dad was. Cass knew what she was doing. I don’t believe there’s been an easier birth recorded in all of history. Cass walked a few feet away from the paddock gate, gently laid down and within a few short moments, Becca slid right out. I did end up having to “go in there”. The birth was so gentle the sack didn’t break from her nose. I got to do that. Becca’s first breath was taken looking right into my face. Now, because Cass does know exactly what she’s doing, she immediately got up and demanded more food, even before cleaning the baby. It was all good!

Welcome to the world! We've been waiting.

Welcome to the world! We’ve been waiting.

 

Took her a few hours to get the swing of nursing.

Took her a few hours to get the swing of nursing.

Now our baby girl is a 7 year old, magnificent mare. She’s becoming the horse we knew she was meant to be. Becca is forging her own way in the world with the help of all the wonderful ladies of Heart of Dixie Equine Rescue. She’s taken to her training so well she may have a show career in her future. Becca is a mare who demands attention. But, then again, she did start off with a huge crowd. Cass is happy just to BE now. She is my Fairy Princess who happens to have been an excellent mother. I’m honored to have been able to help along the way, though she always knew exactly what she was doing.

Momma Cass sends her baby birthday wishes.

Momma Cass sends her baby birthday wishes.

 

Becca, me & Eva.

Becca, me & Eva.


Becca & Catlin on a field trip.

Becca & Catlin on a field trip.

Off To College

She left in November. Putting our “baby” on the trailer was one of the hardest things I’ve ever done. Thousands of worries had been swirling in my brain for the weeks prior. We were offered a once in a lifetime opportunity for her, though, and we had to let her go. We had to let her go to be the horse she was born to be. Cass and I had brought her as far as we were able. We did a fine job but she needed and deserved more.

Becca at Heart of Dixie.

Becca at Heart of Dixie.

So Becca is away at college. The fine folks of Heart of Dixie Equine Rescue are seeing to her education. Julie Barnes, (HOD owner) has lovingly cared for Becca’s sire since we all saved him from slaughter in 2009. We are family. Becca was more than ready for the adventure set before her. She hopped on the trailer and never looked back. Cass never even cried for her. It was as it was meant to be. I felt like my guts had been ripped out, though. When you love deeply, you must do what is best and this is best for our girl.

Julie & Marvin, Becca's sire.

Julie & Marvin, Becca’s sire.

She is flourishing in her training. No surprise there. She’s crazy smart. She’s acquired the nickname “Queen B” since she walked onto the farm like she owned the place. No surprise there, either. One thing Becca’s always had is confidence. Julie and I speak often. It is as it was meant to be. We hope to be able to plan a weekend to go visit soon.

This was just 3 weeks into her training!

This was just 3 weeks into her training!

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A year ago, Scottie and I were sitting in foreclosure court. We were terrified. I was determined. It was mesmerizing and heartbreaking all at the same time. People’s lives were broken down into manila folders and haphazardly tossed about on tables by dark suits. There were only 2 other families there even trying to fight to save their homes.

The noise in the room was nearly deafening. I somehow figured out who the opposing attorney was for our case and I grabbed her arm and simply said, “I am here.” That simple statement changed the course of our destiny. We were able to make a deal outside of court and buy us more time. The time we were allotted showed us more humbling love than I could have ever imagined. It took from January until October to really get it all straightened out. Our home and family were saved. We were saved by love. The worst time in our life was also our best. Because of love.

Love is such a powerful thing. It can destroy. It can build up. Love is capable of connecting strangers for life. That is what happened in 2009. We’d already brought Cass and Becca into our lives the year before. Then we found out that Becca’s sire, Marvin (a 19 year old Fjord stallion) was now in jeopardy of going to auction. For a mostly untrained, pasture breeding, beefy boy, that meant one thing – the kill buyer. Several of us jumped into action. We raised the funds needed to buy him but had no where for him to go. That is when Julie Barnes stepped up and forever changed all of us!

… to be continued…
(Facebook.com/HeartofDixieEquineRescue)
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