To know me, is to know the real thing.

14725582_10157611300170693_6112392010538025485_n Due to a domino effect of used refrigerators trading places, we now have, in our kitchen, a refrigerator that has never had a lock. It sat empty for five days like an alien life form that was a complete mystery. I was unsure how to approach filling it. There aren’t Katie drawers. No insulin or Bydureon rattles around in the “butter” compartment.

275 days into this life of grief, I still buy too many fresh vegetables and yogurt nobody ends up eating. Trips to the grocery store find me standing in front of a shelf not having any idea what to put in my cart. More then once I have walked through the store, pushed my empty cart back into the rack and driven away with nothing in my trunk. One day the butcher found me in such a reverie he said he almost jumped over the case to see if I was alright when I was not responding to his inquiries.

I don’t tell you this looking for pity or sympathy. I tell you so you know the real thing, the real me. I have this firm belief that it is important to share with others the lows as well as the highs. I think it might help somebody else to know what I am experiencing; it might mirror something they are enduring and help them to know how another feels, or it might help somebody who in the future will be in my shoes, or it might simply help you to know me better. To know when my participation in a conversation is non-existent, or distracted at best, that my mind doesn’t always focus or concentrate on what is being said or what is happening around me. Also, I tell you this because you endured all of my griping about the damn locks. You listened and comforted me when I complained about Kathleen‘s stupid syndrome. You knew it was never the inconveniences to me I was bemoaning, but the tragedy of a girl always being hungry which was my cause to wish for a day  I could have a refrigerator without locks. I have one now, I wish it was due to a cure instead of a death. Even without locks, at my house, we are still hungry for a cure……

~~“What we hunger for perhaps more than anything else is to be known in our full humanness, and yet that is often just what we also fear more than anything else. It is important to tell at least from time to time the secret of who we truly and fully are . . . because otherwise we run the risk of losing track of who we truly and fully are and little by little come to accept instead the highly edited version which we put forth in hope that the world will find it more acceptable than the real thing. It is important to tell our secrets too because it makes it easier . . . for other people to tell us a secret or two of their own . . . ” buechner

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Wish!

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For more than half of my life as I blew out my candles, I only had one wish. I wished for Katie to no longer be hungry.This was my constant wish, not just for candle-blowing time.  Now she isn’t. My wish came true, not quite how I had imagined it would, but it came true. Tonight, at age 57 I needed a new wish. It came to me quickly. I wish everyone would have the opportunity to fully understand how much they are loved. It is a humbling feeling, one which will have you thanking your lucky stars, Almighty God, or your deity of choice. Every day since Katie died earlier this year, I have experienced love, care, and generosity from family, friends, neighbors, and almost strangers. There are so many people I have not yet thanked, so if you are reading this and have heard nothing from me, please know I am eternally grateful for whatever you did or provided for me. The magnitude of the love is overwhelming and inconceivable. It is also completely palpable. Grief is the hardest thing I have ever done. I was completely unprepared for grief. I have often stated, and still believe I have been in mourning since Katie’s birth. I mourned the child I expected her to be, the child I had planned on having and raising. She wasn’t who I was anticipating. That form of mourning did not prepare me for the slap in the face, punch in the gut mourning in which I am currently engulfed. I vividly remember the lecture and book by Kubler-Ross, but I don’t remember ever once being told how physical the grieving would be. I know I was never told that somebody who loves me would do my laundry or dishes or carry my purse and open my doors because I simply have no strength. Often I feel like a pile of tar in the middle of a Disney World parking lot on a 110 degree day. The Disney World reference is intentional, because I often think the rest of the world is running on Disney happy place steroids…..while I am the tar. People have been able to temporarily love me out of the tar state. Love has been made visible to me. I don’t wish the death of your child or any other calamity which might be the opportunity for you to realize the depth of love others have for you, so instead I wish you would be open to love whenever it knocks on your heart. Watch for love. Recognize love. Accept love. This I know…wishes come true. Allow yourself to be loved. Allow others to love you. It is, after all, my birthday wish.

Most Exciting Milestone!

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*suck from a special nipple- 5cc at 6 weeks
*lift head from surface while in prone position – 20 weeks 1 day (my birthday!)
*removal of gastrostomy feeding tube -8 months
*chromosomes used in research which successfully resulted in a new method of stretching and staining the bands which means more accurate diagnoses – 1 year
*sit – some of these require that I locate her baby book
*first tooth-
*pull to stand-
*crawl –
*walk – somewhere around 3 years

As I attempt to write about these early milestones, I notice that the milestones most parents fret about must have been inconsequential in the scheme of her life. I have no recollection of when they occurred. As you can see though, I remember the ages she did things that other parents would not know were momentous events. Sucking and neck strength, most of your children had these skills the day they came home from the hospital. Every time I hold a newborn I marvel at the strong neck holding up its heavy head and remember the games and histrionics we performed to encourage Katie to lift hers. Tears well in my eyes when I hear a baby suckle at a breast and my memory turns to the sweet nurse who was brave enough to break through my “I must keep pumping – breast is best” barricade to grant me permission to stop. She had witnessed my relentlessness in attempting to bring forth milk from breasts whose only stimulation came from the “swoop-swoop” of an electric pump. I drank copious amounts of water and was never a second late hooking up the pump. I would sit alone in the “Mother’s Room” rejoicing if any dribble of milk appeared, but mostly I grieved the moments lost with my precious child while I wasn’t in the nursery. I slurped my water, the machine swoop-swooped, and my heart pounded through my chest while I wished I was near enough to see and touch her. While we drove the 90 minutes each way to see her, I splinted my abdominal incision with a pillow and ignored the pain brought on by each bump in the road. Pardon me, I lapsed into a story for another day, but you can see why I didn’t want to spend any of my moments in Peoria without her…. back to milestones.

One thing I learned very early on was that things happen when they are supposed to happen. I can encourage, cajole, wish, hope, pray, stew, worry, pace, cry, bribe, demand, threaten, and give up; all to no avail. None of these things will make any difference if the time is not right. Encouraging and cajoling will help bring the child to the milestone. Hoping and praying will bring me peace and comfort during the wait, but always the most important part for keeping sane is to know that  “I am not in control”. I find that to be a relief. I realize that if the milestone is never reached it is not due to my lack of trying or through any fault of my own. I am not in control. This did not give me a free pass to not try to help her reach the milestones, it simply made me realize that if I did my best, everything would happen as it is supposed to….when it is supposed….IF it is supposed to happen.

When I learned about Prader Willi Syndrome’s bizarre characteristics. My main concern was that my child would always be hungry. In Social Studies we learned that the three basic needs of civilization are food, shelter, and clothing. Knowing that I would never be able to squelch the pangs of hunger of my child left me feeling inadequate as a mother, unable to provide an essential need. Elimination of the hunger has been my fervent prayer since she was four days old when we were alerted to the possibility of PWS. I have always hoped that modern medicine would accomplish this in her lifetime. I never expected to see it during mine. Her gila monster spit medicine(<ahref=”http://http://vandemom2.wordpress.com/2014/06/01/rescued-by-a-gila-monster-and-the-creativity-of-scientists-we-hope/“></a>)
might not be the full monty, but it surely is the closest anyone has come thus far.

I was at work and Katie was with her father after spending the day with her grandmother and various aunts when she sent me this text:

July 22 5:35 pm

what should i do dinner i went tramimu because aunt chris want to show aunt mary is good she had a bad one last night and not very hunury had bumch salad what should do

TRANSLATION of the words, not the punctuation what should I do for dinner, I went to tiramisu (a restaurant) for lunch because aunt chris wanted to show aunt mary that it is good because she had a bad meal there last night, so I am not very hungry because I had a bunch of salad ….what should I do?

BEST TEXT EVER.

A milestone I never thought I would see.

Rescued by a Gila Monster……and the creativity of scientists. (we hope!)

The magnitude of this story is perfectly stated by a friend
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….“I think life sometimes is measured in moments.  you are born in a moment, you die in a moment, you can fall in love in a moment.  everything can change in a moment.  most of our strongest memories are really moments frozen in time, good and bad.
for you, perhaps, this was one of those moments. maybe everything changed.”

Thursday, March 13 was that moment.

Katie and I sat nervously in the office of the endocrinologist. She had just been weighed, so she was quite disappointed and disgruntled before trying to pull herself up and onto the exam table. That is never an easy feat. She tried to step onto the narrow shelf that pretends to be a step stool to the table. Facing the table, she lifted one foot onto the step, lost her balance, grabbed hold of the table and tried to turn around to plop her behind on the table, but was unwilling to move either of her feet. I had her step down, turn around, hold onto me and lift her foot up behind her to step onto the step so she could then, just sit down. I imagine reading all of that was as tedious for you as living through it is for me. This is a routine we do with each appointment. Finally, she was situated, I settled into a chair next to the exam table and coached Katie to look at the doctor when he speaks to her and to answer his questions. Usually she sits and cries. Which is understandable. Every time we leave the office I feel as if I am the most incompetent mother to have ever walked the planet. Endocrinology appointments are not our favorite thing. Our exercise log is accepted with extreme skepticism, her blood sugars are way out of control, and we feel like there is nothing we do that is right.

March 13th changed all of that.

When the exam room door opened a doctor we had never seen before entered the room, introduced himself and by his actions and words it was obvious that he had already studied Katie’s case. He reviewed her A1C levels and smilingly told us that he was pleased that they had remained so steady, that it was much lower than when she was referred to them. There was no change in the number that day than the previous three visits, but the attitude of the two different doctors was like night and day. I wanted to bow down and kiss the man’s feet at that moment, not only for not berating us, but for praising us, which was a first. He looked at her exercise record and said she was doing a great job at being active. Then the moment came. The moment that quite possibly made everything change. His next words were.

“You are doing everything you can do, what needs to be done is to take off some of the weight,  but the Prader-Willi complicates it all, I think I can help with that. I would like to try, if you are willing, some different medications, we will keep her on her insulin and start her on a pill and a weekly injection, her blood sugars should improve, we will be able to lower her insulin and get her off of some of the insulin eventually. Maybe by the end of the year she will need no more insulin. The injection given once a week is Bydureon, some people find that there is a decrease in appetite with it, with the Prader-Willi we don’t know what the effect will be.”

My mind:  WHAT!!!!?????   A decrease in appetite!? gulp, puke, sob, sob, sob, CAN THIS BE POSSIBLE?! don’t fall apart Anne—ask rational questions!

Me: Is that like Byetta? I have read about Byetta’s possible effects on appetite with Prader-Willi.

Dr.: Yes, the same family of,  it is a weekly form of exenatide.

Me: Yes, we would love to try it.

My mind:  sorry, mind went blank here, swirling with the enormity of the possibility of the radical changes this could mean for her.

NO HUNGER! What a wild thought. No grinding of her teeth all night long as she dreams she is eating, no sneaking cheese or pancakes or pizza into her pocket when I blink, NO HUNGER……or even the idea of decreased hunger would be acceptable and welcome. Acceptable and welcome, what a silly phrase for me to use when basically my entire being is shouting, “Oh my God, Praise the Lord, let this really work, Yes, Yes, Yes!!! ”

We listened to the instructions, I made sure much of it was written down, I knew my reeling brain was not absorbing anything other than the possibility of decreased hunger.

We walked out of the office giggling with delight.

As we drove home I told Katie that she needed to really work out and keep good records of food intake, insulin amounts, and blood sugars. I also stated that it will be interesting to know if she feels any different when she is on the new medicine. I told her to let me know if she feels anything different.

Here’s a thought.

If a person has never had the feeling of satiety, will one know what it is if it happens? If one has not experienced something before how do you know it, recognize it for what it is if it does happen?

Here’s the condensed nutshell, please read the attached links to have your mind completely blown, but the basic nutshell is this, a doctor found out that the spit of Gila Monsters affects blood sugar. Some other people found out that injecting this into folks with PWS showed a decrease in their appetite. Now, you and I would think that news should automatically be shouted from the mountaintops, but scientific types thought that the study was too limited to have any real worth. Fortunately, other people are continuing to study this and more fortunately there is a doctor in Rock Island, Illinois who knows all these things and has possibly changed our lives forever.

For weeks I found myself weeping at random moments at the thought of what this could mean for Katie’s life, for my life, for the lives of everyone, everywhere affected by PWS. I tried to tell people who deserved to know the excitement. People who always, sincerely inquire after her well-being. People who love her.  Mostly, all I could do was bawl, I would start out by telling them I had news about Katie, then I would break down. I probably scared the crap out of them. Some I never even told, because the enormity was simply too overwhelming. For those of you to whom I said, “wait until my next blog post”. This is the post you have been waiting for. Read it and weep!

Here is an aside to all PWS parents. I want you to know some of the things these people said to me. To let you know that there truly are people who “get it”.

*This is HUGE!

*I can’t even imagine the changes this will make in your lives.

*sob-she won’t be hungry?-sob-sob-sob

*oh, Anne -hug

* Monster to the rescue…Does that mean there are now gila monster farms, like chicken farms? (I know, not quite showing the enormity, but shows that a sense of humor has always been appreciated by me.)

*I’m very happy for you. And hopeful.

*I do grasp it, and that is incredible news!
*wow, just think what this means
*I never thought we’d see it.
*nothing…..nothing could be better news
With all of the focus on obesity these days, I feel like it is a boon for PWS. Researchers are paying attention to us and wanting to know more about the inner workings of satiety vs. hunger. It has given me hope that someday Katie would benefit from their intelligence and studies. I honestly did not expect it to happen during my lifetime, but I had hopes that it would be in Katie’s lifetime. We still don’t know exactly how much affect it has on hunger. I still watch her chewing in her sleep. Her pockets still show signs of pilfered food. Her need to know what will be eaten at the next meal and the time of said meal has remained the same. What has changed is this, after being on this regime for five weeks her blood sugars had decreased dramatically and she lost NINE pounds. She continues to lose weight and her blood sugars are doing well with very small amounts of insulin.
I am not a scientist, but revere them greatly and think our society is screwed up with its worship of entertainers and athletes. Give me a scientist any day of the week. I might not understand what they are talking about, but I would love to listen to their thought processes and probe them with questions.

My utmost respect and gratitude goes out to the Gila Monster, Dr. John Eng, and Dr. Rameshkumar Raman.

CAVEAT: This might not prove to be the total solution, but the fact that this discovery has been made certainly gives me  hope that more and greater discoveries are on the horizon.

~”It really is a beautiful lizard,” Eng said. “Like many other animal species it is under pressure from development and other environmental concerns. “The question is, what other animal has something to teach us that can be of future value? And plants, too? We will never know their value if they are gone.”

http://legacy.utsandiego.com/news/business/20050429-9999-1b29amylin.html

http://www.ncbi.nlm.nih.gov/pubmed/21632815

http://www.pwsausa.org/research/provigil.htm

http://www.healio.com/endocrinology/pediatric-endocrinology/news/print/endocrine-today/%7Bdda4e2f5-5107-4bd2-838b-614ce5c41c39%7D/exenatide-may-increase-satiety-in-adults-with-prader-willi-syndrome

http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=11280

http://clinicaltrials.gov/ct2/show/NCT01444898

http://www.rdshp.org/research.php

http://www.nytimes.com/2014/01/15/health/seeking-clues-to-obesity-in-rare-hunger-disorder.html

 

 

 

Rare Disease Day, a chance to talk about Prader-Willi Syndrome

It’s here! Rare Disease Day. 10 facts you might not know about PWS:

random facts in no particular order gathered and shared by meImage

10. Prevalence: 1:15,000. [Anne’s note: we are some of the lucky ones who got a very early diagnosis. PWS was suspected for Katie at 4 days old]
9. The constant hunger of PWS is thought to be due to dysfunction of the hypothalamus and/or (not sure) disregulation of hormones of the gut. [Anne’s note: some describe it as “decreased satiation rather than increased hunger”…I never realized there was a difference…doesn’t not feeling satisfied mean feeling hungry? I don’t get it.]
8. The most common genetic cause of life-threatening childhood obesity is PWS.[Anne’s note: the good thing about the current, national hysteria over obesity is that PWS is getting some attention and being used as a “control” group in some hunger-related studies.]
7. Individuals with PWS typically have intellectual disabilities and exhibit more behavior issues compared to individuals with similar intellectual disability. [Anne’s note: I, too, have behavior issues whenever I am hungry.]
6.The constant need for behavioral management and food restrictions may cause stress for the family members. [Anne’s note: the use of the word “may” in this sentence cracked me up.]
5. PWS is a two stage syndrome. Stage one involves low muscle tone,feeding problems and poor weight gain in infancy. [Anne’s note: feeding “problems” become the main focus from the start. A cruel sense of humor has parents doing everything they can to get nourishment into their baby, only to have to restrict it in the next stage.]
4. Of people with PWS, 1 in 35 die from gastric rupture after eating too much in a short period of time. [Anne’s note: clearly the reason for vigilant supervision]
3. Speech, Occupational and Physical therapies are all beneficial for people with PWS. [Anne’s note: and if you are lucky enough to have a Lisa Nordstrom in your school district, a PH itinerant teacher is fantastic!]
2. Growth Hormone Therapy for PWS not only increases final height, but increases bone density, muscle mass,& stamina. [Anne’s note: thanks to Katie, who was a test subject for the research project discovering this]
1. More important than any of the facts you have just learned is this: There is LOVE! [Anne’s note: yes, there is love.]

~Reality doesn’t bite, rather our perception of reality bites. ~

My title is a quote from Anthony J. D’Angelo.
Stay with me on this one, if you dare. It is an attempt to explain a very basic, simple thought, but I know it will be a convoluted and complicated process, because that is what it took for me to recognize the magnitude of its simplicity.

Many people in my life have been instrumental in helping me to see “You only know what you know”. This statement has been used to help induce slumber during countless, sleepless, maternal guilt-ridden middle of the night hours. I have stretched that to mean: You can only do what you know, if you had known any differently at any given time, you would have acted differently due to that knowledge….but, and it is a capital BUT, you didn’t know, so your actions were only based on what you knew at the time. Ah, that thought allowed me to sleep and not flog myself repeatedly over my motherly mistakes. In that respect it has served me mightily, but now I have discovered that it isn’t fully true. I now believe that I don’t really know what I know, what I know is only my own perception of knowledge that I have acquired. You have perhaps acquired the exact same knowledge, but what you know is different from what I know because we each perceive the information differently, dependent on all of the individual experiences we have lived. Our past experiences and the emotion that those experiences have embedded in us determine how we perceive everything else. This means when there is something that I might get really excited about or really worried about, another person might think it is an everyday, non-event.  It all comes down to perspective.

I am frequently melancholic between the dates of Columbus Day and Valentine’s Day. Many family birthdays plus ten of the seventeen major holidays fall during that time period. All of those holidays mean disrupted schedules and abundant, visible food,  which makes life for someone with Prader-Willi Syndrome onerous, thereby making the life of a PWS mother sorrowful. Brokenhearted, for years I watched her frustration with an upset schedule and from her determined and calculated attempts to obtain the forbidden, yet present food. I found ways to avoid events and searched the recess of my brain for activities that might please her. When a person feels as if they are starving it is not easy to please them with anything other than food. A challenge, indeed! This has been the way I have experienced the holidays for the past twenty-seven years, but not this year. The melancholy was my issue. I needed to learn another lesson from my daughter and she readily, yet unwittingly educated me.

One night she was in the living room making comments on a new cookie recipe that a friend had posted on Facebook. I wrote her a message explaining all of the high calorie ingredients of the recipe. She described to me how, if she could make the cookies she would use different ingredients and lower calorie substitutions if she could find appropriate replacements. She ended her message with, “but I can’t so I won’t try them.”. She was full of excitement when she wrote her first comment under the post and ended up easily throwing the cookie idea down the drain! Wishing that we could go ahead and whip up a batch of cookies together and nibble on the broken ones as they came out of the oven, I wistfully wrote to her, “bummer, the holidays suck, don’t they?” Grab your tissues now. I can barely see my monitor screen for the tears that have welled. This starving, cookie wanting young woman’s reply to me, her dismal mother was, “they don’t suck they good if make them that way”.

Once my tears and sobbing subsided, I realized that all these years, my anguish was just that. MY anguish. It had never been her anguish. I had despaired over my wishes, dreams and desires for her. I wanted her to be able to build a gingerbread house and lick the frosting and candy from her fingers.  In her simple statement, she told me that she had experienced good holidays, they had not “sucked”. Any person who loves another person has one main wish for their beloved – happiness. In my misguided mind, I thought that because she wasn’t allowed the holidays I experienced as a child, her holidays were unhappy. While I agonized over lip gloss, hand lotion and sugar-free gum to fill her stocking, I thought the stockings I filled were inadequate because they were not laden with fruit, nuts and “sugarplums”. I will admit that the non-edible items were usually flung aside as she searched the empty toe of the sock hoping to find a treat, this action is what cemented her dissatisfaction in my brain.

Our perceptions of the holidays, our expectations of the holidays were completely different. I wanted to move heaven and earth to make her happy when all I needed to do was make them not suck. When I understood that the possibility of me moving heaven and earth was unrealistic, my hopes became more attainable and this year (so far….cross your fingers that I can carry this over into New Year’s Eve!) the holidays were good.
“they good if you make them that way.”

2013-12-24 025 ed

~You can learn a lot from people who view the world differently than you do.~ D’Angelo

~Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.~ Aurelius

If She Can Do It, So Can You!

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In our society you do not need a calendar to know what season it is. If you listen to the conversations around you it will be evident. During the summer the talk is of  bikini-ready bodies, flip-flops and suntan lotion. September brings freshly sharpened Ticonderogas, football games and Homecomings. Food, food and more food starting at Halloween and gracing every table, desk and counter-top through New Year’s at which time, for the next three months or for as long as their resolutions last, you cannot be near more than two people without one of them mentioning new exercise routines, diet recipes and how on earth they will ever survive their new weight loss regime.

Each of these seasons presents challenges to everyone, especially those living with Prader-Willi Syndrome. For anyone  who is not familiar, I will hop on my soapbox for a moment and explain a few of the PWS basics that affect Katie. One:  uncontrollable appetite due to non-stop hunger; an ever-present feeling of insatiability, yeah, you only think you have that. Now, pause for a moment and delve into your memory to the last time you felt real, physical hunger and imagine that as a constant during wakefulness and sleep. Two: low metabolism causing the utilization of fewer calories. By fewer, I will tell you the results of a metabolic test that she had done once showed us that her body needs only 880 calories a day to maintain. Three: Decreased muscle tone, this is what I fault for her lack of balance and coordination although that might simply be because she is the daughter of the clutziest woman on earth. Four: Back pain due to scoliosis. Now that you have had a crash course on a few of the reasons weight loss and dieting can prove to be problematic for Katie you will better understand how awesome she is.

Katie and I have joined a local Biggest Loser Contest, we are a part of 50 contestants. Although we are competing against each other every week for 3 months, I wanted to write that we are a part of a 50 member team. Through the encouragement of Josh, our “head coach” everyone is supportive of one another, we are all in this together with a common goal. I would be happy to not win any of the $50 entry fee if I could just drop some of this weight. I listen to the struggles and the plans and the confidence, or some days lack of confidence of the others and I think it is amazing to see their dedication and their strength. I know that we all come into this with our own baggage, both physical and mental baggage, but then I think of Katie, who has these extra challenges that are innate. I have the privilege of watching; her concentration as she (oh, I forgot to mention the need for insulin four times a day due to a secondary diagnosis of diabetes) calculates her carbohydrates, her calories and her insulin, her determination as she vigorously works out during a water exercise class, her perseverance as she starts her third quarter of a mile during lap swimming, her exuberance during a rockin’ Wii Just Dance session, her stupendous awesomeness while participating in and completing two 5K s. I have included photos of those incredible days. The first year that she was in a 5K was a bitter cold day, after the start off, she was alone behind the rest of the participants and from the sidelines I tried to encourage her to cut through a parking lot thereby eliminating the one and only hill portion of the race, she vehemently refused and said that she had to stay on course because she had a chip in her shoe! You will find her name next to the entry of the word integrity in the dictionary. She plodded along, down hill and up, in one of the pictures in the attached link, you will see a woman wearing the number 41. She is a total stranger who after finishing the race, ran back to the half way point to walk alongside Katie during the rest of the race. Please take special note of the time clocks in the photos, you will see that in her second race, the one with much nicer weather, she got a new PR beating her time from the previous year.

If you are one of our Biggest Loser competitors, anytime that you get discouraged or think that it is too difficult or you are faltering I want you to think of my remarkable daughter who is in this with you. If she can do it, so can you!…. So can I!

https://www.facebook.com/media/set/?set=a.10150462039260693.643335.552540692&type=1&l=d4fb57f41f