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My name is Katie Jane Brashier. I'm twelve years old and am in the seventh grade. On February 13, 2006, I was sent to the hospital, where I was diagnosed with Type 1 Diabetes. I lost ten pounds in three days, even though I was eating and drinking everything in sight, and I was constantly urinating day and night! I felt terrible! I was so tired & couldn't think straight. I was in the hospital over Valentine's Day, and even though my friends came to cheer me up, nobody could! Nobody could understand what I was going through! Nobody could really understand how I felt! So many doors had closed and I was afraid I was going to die! No sugar, certain amounts of food at each meal, and losing the freedom of eating when I wanted to, 4 to 6 shots a day, pricking my fingers constantly, timing meals and snacks, counting carbohydrates, constantly thinking about what to do next were only a few of the rules that I had to follow in order to stay healthy! Then, a door opened.

When I learned what a diabetic alert service dog was, and what they could do, I was ecstatic! No more sleeping with my mom at night! No more being scared of going to sleep and not waking up. No more getting up at 3:00am every night to check my blood sugar. No more being terrified of having a seizure. No more worrying about my life constantly, every second of the day! It was too good to be true! My parents immediately started researching to find an organization with good dogs in it to help me. When we were connected with HSP, or Heaven Scent Paws, fundraising immediately began. So many people were so generous with donations that it completely amazed me! Suddenly, a tragedy struck. The small son of a good friend of ours died in a horrible accident. The family was devastated! Instead of flowers, though, our friends asked that the money be given as donations for my diabetic alert service dog. Even in their time of grief, this family reached out to help someone else. Nothing could have saddened me, or warmed my heart more! The money that was given in memory of this precious child made up an enormous amount for what I needed to get my dog from Heaven Scent Paws. The thought of it brings tears in my eyes! Everyone I have ever known and some I don't know contributed to the fundraising for my dog!

Then…… We discovered that HSP had not been treating the dogs humanely. The dogs appeared to be starved and abused. Some of the friends that I have made through HSP had to return their dogs because of aggression issues, protection issues, and fear of random people, such as simply someone wearing a hat,..... and biting. The dogs never alerted my diabetic friends that received them. Every dog was returned, every heart crushed by this cruelness. Not only am I upset by the thought of not having a dog to help me, but I am also upset about the money, over $10,000, that was given by so many of my friends and family! I'm crushed by it all. My life has been sent into a spiral of anger, fear, and betrayal! Now I fear, more than ever, of having a seizure or not waking up in the morning. Without this dog to help me, I live in constant fear, every second. Awake or asleep, I am afraid. Now, those emotions that I had when I was first diagnosed have returned, even stronger than before! What do I tell my classmates? My friends? My relatives? The parents of this lost child? How do I fix this? Unfortunately, there is nothing that I can do except to tell everyone about what is going on! My hopes are crushed, my happiness replaced with fear and betrayal, and my life in danger. Please help me to recover what is now lost!

 

 

 

 

 

 

 

Abi’s Story

To Whom It May Concern:

When my daughter, Abi, was 11, she began to have bouts of nausea that were very mysterious to me. Abi has always been a very healthy child and the vomiting seemed to come and go randomly with no other symptoms I could connect – no fever, no cramping, etc. This continued for quite some time. I contacted our doctor repeatedly. I reminded myself of changes in our schedule, eating habits, exposure to viruses, etc. But these episodes of vomiting became more frequent and more prolonged. Abi lost a LOT of weight. I demanded that a doctor take this more seriously . . .this was NOT a typical illness. In mid January, I rushed her to our pediatrician – he barely glanced at her and indicated that she needed fluids. We were to go straight to the pediatric ward where he was calling ahead to arrange for the IV. By the time we arrived at Eliza Coffee Memorial Hospital, just around the corner, she was completely non-responsive. I wheeled her into the hospital in a wheelchair, having to hold her up as I pushed. As we wheeled past the nurses’ station, a doctor jumped up OVER the desk, grabbed the wheelchair and turned it around and told me to follow him. As I ran along beside him, he explained that my daughter was diabetic and experiencing DKA, Diabetic Ketoacidosis. I argued – we were just coming to get IV fluids . . .maybe he was confusing us for a different patient . . Abi did not have diabetes.

I was wrong. He saved her life. She remained in ICU for days. I felt so overwhelmed.

There was so much to learn. My husband was serving in Iraq – I felt so alone. But, at the end of the week - we were sent home – with lancets and meters and test strips and meal plans and carb counting books and needles and 2 different kinds of insulin and emergency glucgon kits . . .

I was overwhelmed. I had learned so much, but there was so much more to learn! My husband returned home in February and observed how well Abi herself was managing all of this. To him, it seemed all was under control- until mid March. One night, in the wee hours of the morning, our entire household was awakened by strange animal-like-guttural sounds followed by a loud crash and banging. We jumped from bed to find the source of these noises. Our dear Abi was writhing on the floor – twisting, jerking, eyes rolled back into her head and moaning. A Grand Mal seizure.

Much to my horror, I learned the next morning that this was not an atypical response to severe lows that often come in the middle of the night.   I was determined that there HAD to be something, somewhere, somehow that could prevent this from ever happening again.

Although Abi wears an insulin pump and checks her blood sugar often as much as 10 times per day, there are unexpected lows and highs. Her sugar level fluctuates with her emotions – fear, sadness, nervousness, excitement all affect her blood sugar. Food affects her blood sugar. Lack of food affects her sugar levels. Growth spurts and hormonal changes affect her blood sugar. The dosing of insulin that is accurate one day is inadequate the next day . . .we are always ‘tweaking’, always figuring, always now in fear of what happens in the middle of the night.

I searched and searched and found a solution: diabetic alert dogs. Amazingly, we encountered a diabetic alert dog only weeks after we discovered that dogs could actually be trained to sense blood sugar changes and alert to highs and lows. I questioned the gentleman with the alert dog and learned that Heaven Scent Paws was the organization through which his dog had been trained and he highly recommended HSP.

We filled out an application. The response was immediate. We were told that, in spite of long waiting lists and tight acceptance criteria, Abi was being placed immediately into the next program. They were sensitive to her age (there would be great fluctuations during teenage years); they were also inclined to bump Abi into the program since she reminded them so much of their story. HSP was started by a mother whose son’s experience with Type 1 was very similar to Abi’s. Fundraising guidelines and an acceptance letter were sent to us. We immediately went to work raising money. The company required that we help them raise $6,000. HSP told us that $25,000 is necessary for them to raise, train, and place a diabetic aid dog – but that we would only be required to help raise $6,000. That money was due by Dec 10. A contract did not arrive in the mail for us to sign until several days after that date. We had not been aware of a contract until after our money had been turned in– we felt we had no options: our money would not be returned, and we believed we were getting a life saving device for my daughter. We signed and returned the contract. We sent in socks with my daughter’s “low scent’.

 On Dec 3, I received a phone call notifying us of the ‘match’ for my daughter. Usually, dogs are not introduced to their partners until the 2^nd day of class, but this particular dog had ‘trust issues’ which, according to Michele Reinkemeyer, the trainer and founder of HSP, would make for a better team. She explained to me that because “Eggo’ was a one-person-dog, she would bond very tightly to Abi, which is necessary for the alerting process. She requested that we send linens from Abi’s bed to introduce Abi’s scent to Eggo. The dog was being trained UNIQUELY to for her – to alert to her low scent. On Feb 2, when Abi arrived in Missouri, we were introduced to Eggo. Eggo was so nervous that it took hours before Abi could pet her, and still the dog gave no indication of being comfortable interacting with a person. We were told that this was because of the dog’s special trust needs and that as their bond increased, so would Eggo’s comfort level. We attended training for the entire 3 weeks. We do not feel Eggo ever alerted to Abi’s “low blood sugar”. The company tells us that she did.

The class structure/ environment were difficult. At one point, my tire was DELIBERATELY flattened by HSP volunteers. My daughter was sick that day. It was a Sunday and rather than going to church, I took her to an emerge-care clinic. Illnesses are very complicated with Type 1; blood sugar levels are totally out of control. It was cold, snow on the ground and raining/ snowing – nasty weather. I got in my rental car and drove a few blocks, but noted that something wasn’t right. The tire was flat. I was in a strange place, with a sick Type 1, in nasty weather, and was CLUELESS about car repair. I had to stop and put us in possible danger by asking a stranger for help. Our tire was repaired and we continued to the Dr. to have Abi’s throat swabbed. Later, when I informed Michele – I learned that she not only KNEW about it, but knew about the ‘prank’ as it was being planned and that they had actually planned to flatten more tires as well!!! This was no way to gain my confidence in their ability to care for/ provide help for my daughter!!!

 But our greatest concern is the level of training or lack thereof, the temperament of the dog we were given and the level of help we have received from HSP.

Beginning on Feb 2, Eggo growled at me consistently. We were told that she was ‘playing a game with me and trying to manipulate me’. Eggo growled AND barked at 2 gentlemen in the mall during training excercises. These exercises (asking a stranger to pet the service dog) were done to ensure the dog had the proper temperament to be used as a service dog. In response to the dog’s obvious aggression issues when strangers approached her, the trainer advised her team NOT to have anyone else try to pet her!. She sent the dog home with us, saying – again- that this problem would resolve as Eggo ‘bonded’ with my daughter more tightly. In the airport, Eggo gave a very aggressive growl and bark to the security personnel. In my home, she constantly growled when my husband was in the room. She growled at members of our church, at visitors in our home, and ALWAYS growled at anyone who entered Abi’s room. This posed a particularly alarming problem – remember, Abi’s blood sugar drops during the night time : this is where the danger of seizures is the greatest. This is WHY we searched for an alert dog. I typically check on my daughter several times during the night. However, with the dog there, I could not get it to check on her. The dog growled, assumed aggressive posture and bared her teeth. During the time, I was told that the dog was ‘going thru a phase’ and we needed to work with her by spraying her with a water bottle when she growled. The only thing that accomplished was to get my daughter and her bed wet several times in the middle of the night – and to give the dog even greater alarm when someone approached her room. This all culminated in our church lobby on one Sunday evening when Eggo made an aggressive lunge and barked at an elderly gentlemen who was just recovering from heart by-pass! It happened so fast and sounded so nasty that I was unsure if she had actually bitten the gentlemen or merely threatened.

Eggo was evaluated by 2 highly credentialed trainers/ scent experts who will testify that Eggo was NOT qualified to be a service dog either by temperament or training and that Eggo did NOT have either the motivation and drive OR the training to do scent work. Our vet was never supplied accurate and complete vet records. Eggo growled at 2 different vets. Once she had to be muzzled.

There is much to our story.  Eggo has been returned to the company. We raised almost $8,000 for Heaven Scent Paws and our experience, service, and product (“service dog”) was NOT what we expected, to say the least. We do not want others putting money into a company like this and getting hurt as we did. Our goal is to warn people to make another choice when looking for a service dog!!

Sincerely,
Rachel Thornton

 

 

 

 

 

 

 

 

 

 

 

Hailey’s Story

I took my 18month old daughter to an emergency care facility the Saturday before Easter (2007) because she had been throwing up and peeing through her diapers constantly. Even though I knew these were some warning signs for Juvenile Diabetes, nothing could have prepared a mother to hear the official diagnosis from the doctor. My world changed when the doctor explained to me my daughter had an auto-immune disease that prevented her body from making insulin to break down the sugars in her food.

For the rest of her life, Hailey’s life would depend on getting the correct amount of insulin, via injections, for the exact amount of food she was eating. The side effects of low blood sugars; seizures, black-outs, comas and inability to think straight were horrifying. The complications of high blood sugars; kidney disease, vascular disease, comas, permanent sight loss, nerve damage and severe feet problems were also horrifying. However, I believed I could prevent all these things if I kept Hailey’s blood sugar well regulated, her food measured and her injections precise.

During the weeks after diagnoses, I learned it is virtually impossible to control a Juvenile Diabetic’s blood sugar. Hailey’s blood sugar levels are impacted by her activity level, her emotions, her health, and many other normal factors. There is no way to keep her blood sugars regulated enough to prevent some of these horrible scenarios from taking place in Hailey. One night, I went to her room to find my daughter laying in bed, pale and shaking. I checked her blood sugar and her meter indicated that her blood sugar was 39 (normal for Hailey is 150) I couldn’t get her to respond to me or open her mouth to drink a bottle of juice. I ran to the kitchen and got a medicine syringe so I could squirt enough juice down her throat to get her to be able to respond to me. That night, I checked Hailey every half an hour, because I was so terrified this would happen again.

While I was watching Hailey, I began researching for more tools to help us fight this horrible disease. That night, I applied for a medical alert dog from Heaven Scent Paws. The website claimed the dogs were highly trained diabetic alert dogs that could alert us as Hailey’s blood sugars began to rise or fall significantly. The following Monday, I received a call from Heaven Scent Paws informing us that Hailey was accepted into their three week program and was enrolled in the July 2008 class. Words could not express the way I felt when I received this phone call. For the first time since Hailey’s diagnosis, I felt like someone gave us the hope that we could actually protect our daughter from things that no two year old should ever face. Little did I know that the hope I felt would soon turn into a nightmare.

Fervently, I began fundraising to raise the required minimum of $7,500 dollars for Heaven Scent Paws. Through family and school donations and fund raisers, we raised over $11,500 to help defray the costs of Hailey’s alert dog. My sister, who also has juvenile diabetes, went to the February 2008 class, and Hailey and I anxiously awaited meeting her dog!

The night we met the dog, I was horrified of what I saw. I watched as my sister had to drag the dog into a restaurant door, because the dog refused to budge. I listened as the dog growled at my daughter and my husband and I learned that the dog had not alerted once. Right away, I knew this was not the company to provide an alert dog and hero for my daughter. My two year old daughter did not have the strength to drag a dog around nor would she be allowed to take a growling, frightened dog to her preschool.

I e-mailed the program director and asked to be removed from the program and have her funds transferred to a suitable program. I got a letter in response that stated she did not know if this was possible, but would check and respond to me. After two weeks of no response, I got a letter from her lawyer saying that they would not move the donations to another company. At this point, I secured a lawyer who wrote a letter, in our behalf, requesting our funds be transferred. In response, we received a letter that said they would not transfer our funds, but if I agreed not to say a word to the media or the Missouri Attorney general, they would make a $3,000 dollar donation to another company in Hailey’s name. We responded by asking, again, for all the donations made in Hailey’s name to be sent to another company.

In response, Heaven Scent Paws told us that the company was not in the financial standing to return our money. This is a huge problem, because we have not been to class or received a dog, so they should have spent none of the money that was earmarked to cover these expenses for Hailey’s alert dog! This company is misusing the funds provided to them, mistreating the dogs they are training, and mistreating the people attending the class. They are taking advantage of parents who are desperate to protect their children from this horrible disease. We would like nothing more than to see this company exposed, and eventually shut down, so that no other family will have to endure the heartbreak that we have endured. Please help us accomplish this.

 

The Bertness’ Story

To Whom It May Concern,

My 6 year old daughter was diagnosed with Type 1, Juvenile Diabetes almost 3 years ago.  Although our family was devastated, we learned that Diabetes was a controllable disease and both my husband and I took classes to learn how to deal with the disease to keep our daughter healthy.  Unfortunately, our daughter turned out to be one of the children whose diabetes can't be easily controlled through diet and injections.  She experiences extreme highs or lows within a very short period of time and shows few, if any, signs that a change in blood sugar level is taking place. (She can have a normal reading and 5 to 10 minutes later be extremely high, or so low she is passing out.   This happens with her being given no food or being engaged in any physical actively.)  We have been very fortunate as we have been able to catch these high and lows and have been able to correct for them.  This means we are constantly on alert, especially at night when we have to test her blood glucose level before she goes to bed, test again before we go to bed, and then set our alarm for the middle of the night so we can test her again.  She is so fearful of going low at night that we have had to remove her equipment from her room at night as she was testing herself up to 20 times within 5 minutes.  Each test requires her to prick her finger to draw blood to use for the test.  When we took her equipment away she fought going to sleep because she was scared.   We were living in a nightmare and didn't know how to help our child.

 We first heard about 'Diabetes Service Dogs'  about 2 years ago.  We though that this might be an option for our daughter and began to research the idea.  We found that these dogs did work and were helpful.  We also learned that the cost of a dog was prohibitive and the organizations we were looking at wouldn't allow a dog to go to a child.  Then we learned about Heaven Scent Paws (HSP).  Everything we learned from the web site seemed very positive.   We could at no time find anything negative about the organization.nnThey talked about their training program for the dogs and showed many pictures and stories of successful alert dog/child pairings.  Although the cost was far beyond our means we decided to apply to try to get a service dog for our daughter.  In July of 2007 we learned that we were not only accepted for the February 2008 class to get a dog, HSP gave us ideas on how to do fundraising to get the money.  We had to give them a $1500.00 deposit within 30 days of our acceptance and pay the remaining $4500.00 by the end of October.  They explained that $6000.00 was the minimum 'donation' they would accept for the dog but that any extra money raised would go to other families who couldn't raise the minimum donation.  They stated on the web site that each dog cost $16,000.00 to $25,000.00 to train.  We were very fortunate.  We did a number of fund raising activities, then our local Variety Club stepped in and graciously paid the deposit (unfortunately we had already paid it) and paid the remainder.  We also gave HSP all the money we had raised.  After we had raised all the money and paid it the  contract came for our family to sign.  Before we paid the deposit we were informed by Michele Rienkemeyer that the contract was a simple confidentiality contract so that we would not tell of their training methods.  When the contract arrived it was so much more than that.  It said ridiculous things such as HSP could remove the dog for anything that they viewed as negativity.  Our only choice was to sign the contract because we were told by Michele Reinkemeyer that if we chose not to sign we would be removed from the program and we,  nor  any of our donors, would receive a refund and we would not get a  service dog.  We felt we had no other choice but to sign it, even though we questioned the advisability.

In February my daughter, my 4 month old infant and I went to Missouri to do the training and to get our dog.  It is the most difficult time I have ever spent in my life.  The classes were run like a detention camp.  We were constantly threatened with expulsion if we didn't do everything exactly as they said.  We were discouraged from talking with the others in the class outside of class time. 

 When the first dog we were given constantly nipped at my daughter it was her fault because she wasn't aggressive enough with correcting it.  She was told that she would never be allowed to run with this dog because it would nip at her.  The second dog we were given was terrified of everything, including me.  It shook and cringed whenever I got close to it for the first couple of days. When this dog went to the bathroom in the hotel room HSP blamed it on the fact that my daughter hadn't taken him potty enough.  When in reality the dog messed in the hotel room all three times within 20 mins of  having a lengthy potty break.   We witnessed others being berated for supposed infractions but couldn't say anything about it.  I was scared to tell my husband what was happening in case my telephone conversation was being monitored and we were kicked out ot the class without a dog.  Both my daughter and I became violently ill but we had to keep going to class because we were afraid of being kicked out.  There was another family who was threatened to be removed because of sickness.  Although on one outing to the Reinkemeyer farm three of the other participating families cared for my children while I was able to sleep.  I was so violently ill I could not keep my head up.  The next day were allowed to stay in the room that evening as we had been to the doctor and placed on prescription medication.  We were left with little or no self esteem but  put up with it because the end result was to get help for my daughter.  Our dog never did alert to a low or a high while we were in Missouri.  It was a horrible experience.  No one has the right to treat people the way many of the families were treated.  They intimidated us into compliance through our fear of what diabetes could do our child if we didn't get an alert dog to help them.  They operated on total emotional blackmail disguised as caring.  The only positive in the whole experience was that my daughter got to see, and be with,

other children who were insulin dependent.  She was normal in that environment. 

When we arrived home with the dog it still didn't alert and was very fearful.  It was also not house trained even though it was obedience trained.  The dog and my daughter had formed a good bond.  She loves him even if he isn't doing the job he should do.  We began to wonder why it still wasn't alerting but were assured that if we followed directions it would begin to alert soon.  After being home a few weeks we decided to have the dog evaluated by and independent trainer.  We contacted out local police to see if we could find someone who trained police dogs to do an evaluation on the dog.  We took the dog to one of the recommended trainers who, after testing said:       

1. The dog is 'not well socialized and appears to have environment sensitivity  issues.' making it unsuitable as a service dog.         

2. The dog 'does not exhibit any behavior that shows he recognizes the odor.' of low blood glucose.         

3. The dog 'gives no alert or response that could be recognized' to a low blood glucose level in the child.         

4. 'Other than extensive obedience training, I do not see any signs of' the dog 'being specially trained to perform any service to' the child 'or her parents.'

Needless to say we were very upset.  We have had to write to, or tell everyone that had helped us raise funds to get the dog that we had been scammed.  At the cost of being left emotionally bankrupt at the end of our 3 week training period, the costs incurred in getting to and staying in Missouri, the cost of my husband taking the time off to be Mr. Mom to our son at home, plus $9128.00 donated to HSP on our behalf, we did not end up with a diabetes alert dog.  Had we received the diabetes alert dog we were led to expect we would have been happy to pay the price, including the emotional abuse we were subjected to, as our daughter would be safe.  Instead we got an obedience trained dog that isn't housebroken.  My daughter and the dog have formed a strong bond.  The evaluator saw that bond and feels for that reason alone, that with a lot of time and work, perhaps the dog can be trained as an alert dog for my daughter.  We are working on it with advice from another organization that trains alert dogs.

People have said 'if the dog doesn't work then give it back and get a new one.'  HSP told us that if the dog ever stopped alerting it was because we had broken the training.   They would take the dog but would not replace it.  Of course they didn't mention the posibility that the dog would never start to alert.  We would accept another 'trained' dog but could never force our child to give up the current dog.  The bond she has with her dog now is very strong .  We fear that if her dog were to be torn away from her she would not let herself bond with another one.  If she kept the first dog she could learn to bond with another.  If HSP didn't train the one we have they most likely would not train the next. 

By going public we know that HSP will probably try to get the dog back.  My daughter has experienced enough heartache, we will not give her dog up without a court fight.  We still set our alarm at night and watch our daughter constantly but she now has a four legged friend that somehow makes her feel less fearful.  She truly believes that her dog will soon begin to alert on a consistent basis.  We hope she is right.

Thank you

Michael and Lyndsay Bertness