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MACH Pine Run A Li’l Daph’ll Do Ya WC MXB MJC ADHF AAD OD OF (5/6/2001 – 7/26/2014)
Daphne – A True Hero
Daphne was born on May 6, 2001 and her owner Mardi hoped to pursue performance sports with her. Daphne had a successful first litter and Mardi began planning for a second litter in late 2006. As part of that planning, Daphne went in for her annual eye exam in January 2007 and Mardi was shocked to hear the ophthalmologist tell her that Daphne had a rare suspected case of PRA and suggested a second opinion.
Mardi quickly set up an appointment with Dr. Gustavo Aguirre, one of the doctors who had developed the DNA test for prcd-PRA. He unequivocally confirmed the diagnosis of PRA, and immediately drew blood for the DNA test. Dr. Aguirre told Mardi that since PRA was considered generally rare in Golden Retrievers, only a few Affected Goldens had been tested previously (probably about 20). None of those tested had revealed the presence of the prcd-PRA gene.
Dr. Aguirre also explained that if Daphne was Affected with the prcd-PRA gene, although it would confirm sad news for Daphne it would be “good” news for the Golden Retriever breed. Since the DNA test would allow Goldens to be genetically tested for prcd-PRA and not run the risk of producing any more Affected Dogs.
In February 2007, Daphne’s DNA test results indicated she had two copies of the mutated gene that had been proven to produce prcd-PRA in nearly 20 other breeds of dogs. She was the first Golden Retriever identified to be Affected with the prcd-PRA gene. Another unrelated Golden was identified by testing in June 2007. The news of both Affecteds impacted many breeding programs, but Daphne’s discovery was the start of Goldens being tested for the prcd-PRA gene by Optigen LLC – the first laboratory licensed by Cornell to perform this test commercially. Because of Daphne, wide-spread Genetic Testing began in Goldens.
Daphne, her breeder and friend Gerry Clinchy, and her owner Mardi gave the Golden Retriever community a great gift by participating in this ground-breaking genetic testing. And today, we have genetic testing readily available to help make sure we don’t do Carrier x Carrier breedings which can produce Affected dogs ever again.
On July 1, 2007, Daphne did earn the coveted “MACH” title with decreased vision, and she also became a member of the GRCA Agility Dog Hall of Fame. She eventually became blind, but lived a long and happy life. It took one generation of breeding her Carrier offspring to Clear Goldens to eliminate the condition from the breeding program. Two of Daphne’s grandkids were bred to Clear Goldens and now Mardi’s breeding program has Clear Goldens to continue producing very successful offspring.
(Adapted from a story originally published by Daphne’s co-breeder, Gerry Clinchy)
2019 began with me happily anticipating my new litter. I’m always excited when I plan a breeding, and it’s fun meeting new people or working with folks that had purchased dogs from me in the past. I had used the sire of the litter before – a talented, accomplished, highly titled HRCH MH WCX Golden, and he produced nice puppies for both pets and as field prospects. I thought this breeding would result in a lovely litter…
Just weeks from my girl’s due date, the Stud Dog Owner contacted me about NCL5 (NEURONAL CEROID LIPOFUSCINOSIS) – until November 2018, very few people had even heard of this horrible disease. Unfortunately, he had tested his dog and he was an NCL5 Carrier. He told me about the link to another Carrier in his dog’s pedigree.
Unfortunately, my girl had this same dog in her pedigree many generations back. I had her tested for NCL5 by the University of Missouri immediately – her puppies were due in just a few weeks and the wait was agonizing. I can’t begin to explain how devastating it was to find out she was also an NCL5 Carrier.
By that time, most of us had been reading stories about the young Golden girl that had been euthanized because of her advanced-stage NCL5 stage before she was 2 years old in November. Both the Stud Dog Owner and I knew that it was likely that our litter would produce an Affected Puppy since we had unknowingly done a Carrier x Carrier breeding. I was physically sick to my stomach knowing what I created.
The puppies were born February 7, 2019 and we had a litter of 11. I knew the entire litter had to be tested for NCL5 as quickly as possible. I asked the University of Missouri if we could test dewclaws, but they told me that would not be enough tissue. As a result, in order to get accurate test results, I had to wait until they were old enough to do the cheek swab to send in DNA samples for each puppy.
I cannot begin to tell you how it felt, watching these babies grow every day, knowing that a couple may never live to see their second birthday…
At 4 weeks, I tested all 11 puppies. Results the University of Missouri came back with devastating results – the litter had 5 Affected, 4 Carrier and 2 Clear puppies. I could not believe it. How could I have so many Affected puppies?
I was contacted by Natalie Villiani, who had been doing the NCL5 testing at the University of Missouri, to see if I would consider donating the Affected puppies for their research program. But before any decisions could be made, all of us wanted to make sure the results were correct. I had to take my 6 week old puppies to the Veterinarian and watch as the Vet Techs took blood samples from the jugular vein of my screaming puppies. I kept telling myself that it was for the best as I comforted each one afterwards.
Keeping the puppies all marked was a challenge until I could microchip. The blood samples were sent and the results came back the same. I called my favorite Veterinarian to ask for advice about donating, and got many questions answered.
When I got the second set of NCL5 test results back, I had another conversation Natalie on behalf of the University of Missouri, about donating the puppies. I just sobbed… and I could barely talk to Natalie.
My daughter is a Senior at UWRF studying Pre-Vet. So, with my background in biology, my daughter and my Veterinarian telling me the puppies would be OK, I did make the decision to donate the puppies.
The University of Missouri did not want the puppies until they were 12 weeks old. I had 3 months to fall in love with these 5 innocent puppies who will never live to enjoy a full life…
The Stud Dog Owner picked the puppies up at 12 weeks to take them to the University of Missouri, and I cried when they left. They deserved much better than the fate this horrible disease had dealt them… They were just fuzzy little babies that by then we had named, and were retrieving, and being just like any other Golden Retriever puppy.
How do I feel as I am writing this 5 months after they left? I cried through writing this. The guilt is awful. I will never be the same.
NCL5 is preventable through Genetic Testing. If we had only known about the research in 2015, and begun testing then, none of our Goldens would have been condemned to early, preventable deaths.
PLEASE do Genetic Tests as a part of your Health Clearances for your Goldens. This is so unlike anything that I’ve ever been through… Do it for the Breed.
Holden’s Story of DCM
Caroline and Evan
On Friday, Nov. 2, 2018 I woke up and checked Holden’s Instagram and saw quite a lot of noise about the grain-free diets (with legumes) in dogs, specifically what was happening with Golden Retrievers. One of Holden’s friends, Barley, from @barley.and.stella had shared that she had recently been diagnosed with Dilated Cardiomyopathy (DCM). I learned that Barley had very heavy breathing and was admitted to the emergency veterinarian. This made me think about my sweet Holden.
For several months, Holden has had some pretty intense breathing, but always when playing with Sophie or after a long walk… nothing too out of the normal. I did notice that he was putting effort into breathing when he was laying down, but this is just what Holden did. He loved to play, fetch, swim, hike, snuggle — just like a normal, healthy Golden would. He never seemed to get fatigued from too much exercise. I would have never taken him to get checked out if I hadn’t seen Barley’s Instagram post.
That Friday, I called the veterinary hospital where I actually worked as a veterinary technician throughout college, and let them know what was going on with Holden. I told them I was probably just being a “crazy dog mom”, but I just wanted to get him checked out to be safe. Better safe than sorry, right? We got an appointment the next morning.
So on Saturday, November 3, 2018 I took Holden to see one of our favorite veterinarians. She listened to his chest and heart, and all sounded normal. So I was all like … “whew, I truly am just a crazy dog mom. This is great.” She asked a few more questions about his breathing and said that they would take some X-rays to make sure all looked fine.
And that began our roller coaster. After they took his films, she brought Holden back in and let me know they found something that wasn’t supposed to be in/on his cranial mediastinum. This could be a few things: lymphoma (cancer), thymoma (fatty tissue) or infection. Of course when I heard the word cancer, I flipped out and the tears flowed. There is just no way my perfect dog is sick… We just went hiking last weekend! He is fine! We didn’t know much else and were scheduled for an ultrasound on Tuesday, November 6, 2018. I was a worried sick. All I could do is think about how amazing Holden is and that he is just too young to have anything like this happen to him. He was just three years old. He is my very best friend. I can’t imagine life without him.
We got some very good and very bad news at the ultrasound. The good news was that the mass on his cranial mediastinum was just fatty tissue – thankfully, no lymphoma. The bad news was that they decided to do an echocardiogram on Holden’s heart, and found had that he has just too big of a heart and fluid in his chest. The vet asked if we could pick him up and go straight to the emergency vet to see the cardiologist.
All of this happened so fast. I woke up truly thinking my sweet boy had cancer, and now I had to wrap my brain around the fact that his heart needed immediate attention. The cardiologist told us they would do an echocardiogram and an ultrasound to confirm his diagnosis. Several hours later, we got the call that confirmed this diagnosis – Holden was diagnosed with Dilated Cardiomyopathy (DCM) and Congestive Heart Failure. Holden basically had one big heart (and not because he loves so much, even though this is what I’d like to think). His left atrium is mildly dilated, left ventricle is severely dilated. Systolic function was severely reduced – which is indicative of myocardial failure. His posterior mitral leaflet did not move normally. Mild mitral valve regurgitation was present.. It just kept going on and on.
At this point, I was just angry. I couldn’t believe that he was actually this sick. DCM does not typically occur in Golden Retrievers. By now, I am sure you’ve seen the research going on about grain-free diets, specifically with those high in legumes, and the link to heart disease in dogs, especially in Golden Retrievers. I had read up on the Research that UC Davis is doing on this link to heart disease, and of course Holden had been eating the one food the main researcher said to avoid, for over 2 and a half years.
Holden’s labs were sent to UC Davis to confirm taurine deficiency. This is important because it confirms if it is related to the diet Holden was eating. The lead researcher at UC Davis told Morris Animal Foundation said, “I suspect that golden retrievers might have something in their genetic make-up that makes them less efficient at making taurine,” said Dr. Josh Stern. “ Couple that with certain diets, and you’ve given them a double hit. If you feed them a diet that has fewer building blocks for taurine or a food component that inhibits this synthesis, they pop up with DCM.”
If Holden had low taurine levels, then we would know his diagnosis was linked to the diet he was on – UC Davis did determine he had low taurine. Holden started his five medications that night, including a diuretic to help get the pooled blood out of his chest cavity. We didn’t know how long he would have to be on this medication.
In case you’re wondering what his meds were:
- Taurine Supplements
- Carnitine Supplements
At this point, we just had to wait and see. We kept him pretty quiet during this time, but still let him “be a dog” and go on short walks and play with Sophie. I gave him so much love each and every day because I knew that any day his heart could just stop working.
What a special dog. He is truly amazing. After he started his medication (over 20 pills a day), his heart was out of Congestive Heart Failure after a week. This was really good news to know that his heart was already responding to the medication.
Months went by of us continuing the meds and giving lots of love. We did monthly check ins with our primary vet to make sure he didn’t go back into heart failure, and after four months, we decided to get films again. The results were astonishing.
Holden’s heart had SIGNIFICANTLY shrunk in size. We had no idea just how enlarged it was until we saw that. Like what?! How can a heart do that? We didn’t know, but I am so thankful it responded to the medications.
We went back to our cardiologist at six months post-diagnosis, and were actually able to come off of some of the meds! No more diuretics. This was HUGE because it meant Holden would be more comfortable throughout the day, instead of having the constant urge to pee to avoid fluid build up. He was still on medications three times a day, but this was definitely awesome step forward.
Holden came to love “meddies time”. We’ve been told we can let him be a normal dog, but we must keep an eye on his resting breathing rate. So I monitor his breathing when he is in a deep sleep. Holden is doing great. He is beating this. He is strong.
The FDA released an update to their investigation on these diets linking to heart disease. This was a HUGE step in the right direction. They actually released the names of the food companies that have led to cases of DCM.
Holden is one of the 67 dogs that ate Acana. Those are just the dogs reported to the FDA. I have heard from so many people that fed their dog foods on this list that died without warning, which easily could have been DCM. There could be thousands of other cases. The FDA does not just put this information out there for no reason. Dogs are dying. Families are hurting. This is real. And Holden is a part of this. His case is actually on page 38 of the complaints made to the FDA in case you are curious.
This is definitely a step in the right direction, however, these companies are still trying to deny it. Saying there is no scientific evidence. That they research their foods. That their foods are safe. WRONG. Holden’s plasma taurine level was 9. His whole blood taurine level was 82. This is extremely low. His heart is REVERTING. That is only known to happen to dogs with DCM caused by the food. That is evidence.
The good news is that Holden is improving. On September 5, 2019 the cardiologist called Holden’s case a “success story” – Holden’s X-rays and echocardiogram showed normal heart size and normal heart function.
Holden was able to come off of all heart medications, and takes only carnitine and taurine supplements. in November 2019, we will do a final echocardiogram and will recheck Holden’s taurine levels (which were EXTREMELY low 10 months ago). We hope to be able to say that Holden has made a full recovery and will be able to be medication free. We believe that he will.
Luckily, due to the power of social media, I came across what what happening to other Goldens and took action. Instagram saved my dog’s life. If you are concerned about your dog’s diet or health, I highly recommend chatting with your veterinarian. Holden’s life was truly saved by me simply being the crazy dog mom that I am and listening to my gut (even if I just saw it on Instagram!).
If this is the first you’ve heard of Holden’s story, I want to thank you for taking the time to read this. If you are feeding your dog a boutique, grain-free diet, please do your research. This is real. Holden’s heart was too big to function, to the point we are so, so lucky he is still with us. I am just so thankful that he is, and I will do everything I can to try to save other dogs’ lives as well.
Feel free to share Holden’s story, as we want to help prevent any other families from going through what we have gone through the past year and what we may have to face in the future.
We encourage all Golden Retriever owners to do the Embark Genetic Test on their dogs. You can contribute to a large database of genetic data available FREE to researchers like Dr. Josh Stern simply by testing – and it doesn’t cost you anything extra! Who knows, it may be our dogs who help Dr. Stern solve the DCM issue facing Goldens. Hopefully genetic testing will help with many new discoveries to improve the health of Golden Retrievers.
Join Holden’s journey on Facebook at https://www.facebook.com/holdenthegoldenretriever/ and on Instgram at @HoldenTheGoldenRetriever