2015 Kammy’s Kause Online Art AuKtion










In order to spread more awareness about our event and 4p- syndrome, we are opening up the artwork, created by individuals who have 4p- syndrome, for both onsite and offsite bidding!

Even if you will be attending Kammy’s Kause in person this year, we highly encourage you to place your bids online if you have a SmartPhone. Once you’ve placed your bid amount, you will be notified if you’ve been outbid. You can also set a maximum bid amount and allow the site to submit proxy bids for you that way if your lowest bid is outbid by another bidder it will increase it for you up to your maximum bid amount.  Onsite and online bidding will take place on Saturday August 29th beginning at 12:00pm EST and ending at 9:00pm EST. So be sure to sign-up and bookmark our auKtion page:


Let the bidding begin!


Online Patient Registry Portal Now Open!

The International 4p- Patient Registry online portal is now open for enrollment!

To enroll, click here.

Announcement: International Patient Registry Underway!

Dear families and friends in the 4p- community,

We are thrilled to announce a very important step in advancing the research and care of individuals with 4p-. After many years of hard work from the 4p- Support Group, an international patient registry is officially underway. A patient registry is an online database that stores important information in a systematic way and can be queried into data …reports. This will make a huge impact on our community because we will not only be able to define 4p- more accurately, but also answer the questions many of us have, such as, “What percentage of affected individuals have seizures, sleep disorders, or renal failure?  What treatments work best for seizures, sleep difficulties, or ADHD?”  By defining the syndrome more effectively, we can better educate our families and in turn the medical community about 4p-. The patient registry’s long range goal is to determine effective treatments to provide a better future for all our loved ones with 4p-.

Participation will be completely voluntary and will begin at our national conference in Harrisburg, PA this July. At the conference, we will have a special session about the registry, where we will answer any of your questions. We will also be posting updates on Facebook. By participating in this registry, families will play a pivotal role in helping our community, medical professionals, and potentially researchers gain a better understanding of this complex syndrome. Participating in the registry is the single most important thing families can do to help build a better future for those affected by 4p-. We hope you are as excited as we are. Thank you all for your support.

Unique Family Genes

Unique Family Genes
By Eva Viera
Family in the early years of my childhood was very non-traditional, dysfunctional, and yet I would not know it until I turned around 8 years old.  What I did know was that having two wonderful older brothers made me into a “toughie” and a tomgirl (tomboy).  I had to keep up with all the rivalries and games that two boys would challenge me with.  At the same time I had responsibilities with a new born sister, or so I thought she was new born because of her size.  Rosa was born in 1961, and she was such a good baby, it was rare that she would cry.  She kinda whimpered a bit at times like a little kitten’s low key “meow” and none of us kids thought she was any different.  She was born with a foot problem.  Her little right foot was turned inward and had to be “broken” by hand and placed in a cast.  That is what we were told as kids.  Two years after Rosita was born; mom gave birth to a baby boy.  He was named Raul and he looked so much like Rosita; same hair except with a very light complexion and he was very, very small.  He too hardly ever cried.  He was born with a cleft palate although, not noticeable from looking at him because his lips were perfectly shaped.  His cleft palate opening was on the upper inside in the roof of his mouth.  He couldn’t nurse from breastfeeding which was how mom raised us.  We were all breastfed until 1year old.  Raul lived a little less than a year and passed away in our house.  I remember our family doctor and a hearse came to our house and took him away.  I don’t remember attending a funeral service.  My last memory of him was that.  Not knowing then about WHS; I can’t help to think he might have been born with the same genetic disorder, born and died in 1963.

My life revolved around my sister.  We shared beds. I would carry her outside to sit and watch us play.  She smiled and laughed at us running around and being mischievous.  I fed her with a spoon mashed table foods.  She bathed when I bathed and as I lathered her up and rinsed her body and hair, there was lots of playing and laughter in the shower.  I took care of most of her basic needs except change diapers.  My mom took care of that.  We had an everyday routine.

Oh, and there were night games when we were in bed, the blankie covers tent and singing to her and playing “touchie nose game”.  You touch my nose and I touch your nose while I sang her to sleep.  By the way, she still remembers the touchie nose game after all these years.  At age six years she was having convulsions which after one year of medication they completely stopped.  Might I also add, one year before I was born; a baby girl born with cleft lip and palate also passed away at 4 days old.

Rosa and I were separated for a few years after a lot of things that happened with our family.  So, we will fast forward to my adulthood and being a mother to a beautiful five year old daughter.  I was happy and pregnant with my second child at age 27, I had a couple of ultrasounds.  One at the beginning of my pregnancy and a second towards the end of the ninth month, and I was never told there might be a problem with the growth of my unborn child.  On my due date, I was scheduled a C-section because upon a vaginal checkup my child was found to be breech.  The doctor tried to turn him to get him ready for birth; but ended up bursting my placenta.  The C-section went well, and I was told I had given birth to a healthy baby boy as per the pediatrician in November of 1986.

Two days went by in the hospital before they brought my son Aldrick to me for the first time.  The nurse said they had been feeding him formula with a dropper due to bottle nipples being too large and his mouth too small to be able to suck well or so they thought.  Of course he couldn’t latch on to the nipple, he didn’t have strength to suck.  I was not breastfeeding; it was not something I ever wanted to do.  When I first saw my beautiful baby boy, my eyes teared up; the nurses left and they didn’t notice.  My maternal “GUT INSTINCT” knew something was different.  He looked perfect, tiny, cute, rosy pink, smelled like a baby.  But, I knew.  The pediatrician said, “It’s all in your imagination, he’s healthy!”  His little face was identical to my sister.

Two weeks after taking him home he was losing weight and he was trying very hard to latch on to the bottle nipple and I was giving him most of his formula by 5cc syringe, not only every two hours but, constantly it seemed, because he wasn’t being satisfied.  So I fed him a lot.  He slept 5 minutes and wanted more, so I gave him more.  He had this desperation in his appetite.  He wouldn’t cry either, just antsy all the time with very little sleep in between.  So, he had failure to thrive and was losing weight.  I had the opportunity to fire two pediatricians along the way after one thought I was trying to starve my baby and had him admitted then called the child protective services.  Which after a two week stay, I ended taking my son out of hospital “Against Medical Advice” until a NEW pediatrician gave us 24 calorie low-birth weight formula, which did wonders.  At that time I couldn’t buy that formula, it was only given at the hospital under supervision for premature babies.  So the pediatrician had a rep bring cases of the formula and he GIFTED us with it… koolest, baddest, greatest pedi EVER!  At six months a two hour seizure, followed by many hospitalizations, month after month and week after week.  The seizures were sometimes up to 24 per day.  Sometimes now all I see is a blur.  It’s been a tough road for a super strong willed child.  Aldrick has been thru two car accidents with one resulting in a skull fracture and coma for four days in the intensive care in 1989, appendicitis in 2004 and sepsis from a rupture, to being “declared there is nothing else we can do for him”… MIRACLES DO HAPPEN.  That’s all I know.




Today Rosa is living in a group home in San Antonio, Texas.  She is a healthy and happy lady of 51 years.  She will turn 52 in April of 2013, god willing.  Rosa is 52 or 53 inches tall, and weighs 60 pounds.  She is non-verbal.  She feeds herself, does not chew but swallows textured table foods very well.  She bathes herself, dresses herself, she is toilet trained.  She loves to drink coffee in the mornings, crosses her legs while she sits and loves to leaf thru the latest magazines.  Rosa never attended school as a child or had no therapies, in those days of the 60′s, schools did not accept “mentally retarded kids” as she was classified.  So, she does not read of course, but understands everything, likes to help out and do chores around the group house.  They call her “Mama Rosa” at the group home because she bosses everyone around to be proper in everything they do, like sit properly at the table or button your buttons all the way up, or lights need to be turned off if no one is in that room, beds need to be made.  Oh, and it has to be done correctly.  LOL, I visit her as much as I can and we sponsor a Christmas party at her group home for her and five other ladies with music, dancing, props, food and lots of fun.  After all that’s the least I can do for my little sister.  I cry every time I leave from there.  I feel sad to leave her behind… all she has is ME.  Rosa was undiagnosed until 1986 when Aldrick was born, her test was abnormality of 4th chromosome, but so was mine and Aldrick’s, nothing more was known at that time.




My Aldrick today is 26yrs old he will be turning 27 in November of this 2013. He is non-verbal, he points, gestures, and lets all of us know how he feels, his wants and needs. He wears diapers size 6 Huggies, size 6 in boys. He’s very tiny for his age group, only 48 inches tall and weighs 45 pounds. Aldrick totally depends on me for feedings which he does not chew and he eats by syringing mashed, pureed foods by mouth. He does not tolerate to eat with a spoon. He did when he was younger. He has oral aversion so most of the time it’s a battle to feed him but he loves to drink Ensure by sipee cup on his own. He depends on us for dressing although he can take his pants and shirts off if they are pull-up or elastic waist. He walks with poor balance and at times needs to be assisted by holding his hand especially on uneven surfaces or to climb staircases. He is transported by wheelchair for long distances, walks or travel. He tires easily and has an Atrial Septal defect, seizure disorder, endocrine disorder, and a pituitary disorder. He is a very happy, quiet kid who loves to play with toddler toys and music. He dances with his arms, and enjoys watching videos and live music bands. He travels with us everywhere we go on vacation and every day of the week. He loves to go bye-bye even just for a drive to nowhere in the car. LOL. Aldrick’s chromosomal tests in 1986 showed abnormality, but no diagnosis was given. My searches online self-diagnosed him with WHS by pictures of dead fetuses. In 2004, I had him confirmed with WHS thru FISH. We are a Unified and Unique family… Rosa, Aldrick and I (hubby included) till the end of time… I thank god I have the strength to care and provide for them. I am a RICH person. They both provide me with unconditional unspoken love, lots of blessings, and a sense of Godly humbleness and gentleness, that keeps me with faith and belief in my heart. 





Meet Justin – Winner of our first T-Shirt Contest!!

My name is Leanne and my son Justin (above) will be 26 years old this month. 26 years ago there was no support for WHS. My first contact was Becky Richardson. Then we found out about the first conference in Iowa. We got to meet other children like Justin and started to have hope. And then it was great to be at the 20th National Conference. We had been to others also and the regional ones too; until then I was grieving and in denial.
The group has helped me so much now and we love the gatherings and the national conferences. Now that research has come so far and Justin is doing so much better than when he was younger. We are able to help the new moms on this wonderful WHS journey. He is my little man and just like men he loves women, sports, and his music. He is still small, 4ft and 63 lbs. He is totally tube fed, can walk and say mama. He understands everything. Our biggest problem with him now is his seizures. He was seizure free for 5 years and then when he hit puberty they started back.
It was great winning the WHS shirt and then I bought us all one. When we wear them we always get people to ask what they are about, even doctors. We also wear our WHS bands and I can’t tell you how many we have given away; not only to people we meet but also doctors. We love it to get the word out about our children. Justin has taught us and the doctors so much. We are blessed to have him in our family.
–Justin’s mom

Celebrating 10 Years of Kammy’s Kause

Kammy’s Kause began with one father’s desire to spread awareness about his daughter’s genetic condition called 4p-.  This summer, August 23rd & 24th, Kammy’s Kause will celebrate 10 years of restoring hope and transforming lives across America in ways we never could have imagined.  There is something unexplainable that happens within us when we reach out and help someone whose needs are greater than our own; this is the heartbeat of Kammy’s Kause.  Our lives are like ponds and our actions are the rocks that we toss into those ponds – rocks that create ripples which are felt and appreciated by people in places we never believed we could reach.

The continued support from our community is imperative and YOU have the opportunity to stand up and use your voice to create a ripple by supporting the only fundraiser of its kind in the United States, Kammy’s Kause.

Two days of music, food and friends for the Kause. Raising money to fund awareness, research and support for families with children diagnosed with 4p-, also known as Wolf-Hirschhorn Syndrome (WHS). To date, we have raised $115,000 which has been donated directly to the 4p- Support Group.

Admission: $5.00/Per Person
Parking: FREE
Camping: FREE

Friday, August 23rd:
6:00PM = Gates Open
8:00PM-9:00PM = Chad Mills & The Upright Willies
9:20PM-10:20PM = Landon Keller
10:40PM-11:40PM = Jenn Cristy
12:00AM-?? = Blue Moon Revue
Kammy’s Kause Akoustic Korner (side stage) = Alan Long & friends

Saturday, August 24th:
11:00AM = Gates Open
2:30PM = Arrival of KAMMY’S RIDE
3:00PM = 4p- FAMILIES
3:30PM-4:30PM = 350 West
4:50PM-5:50PM = Dell Zell
6:10PM-7:10PM = Cory Williams
7:30PM-8:30PM = bleedingkeys
8:50PM-9:50PM = Audiodacity
10:10PM-11:10PM = Breakdown Kings
11:30PM- ?? = Twin Cats
Kammy’s Kause Akoustic Korner (side stage) = Alan Long & friends

*Times are subject to change.
*Stay tuned for more details about Kammy’s Ride, AuKtion, Kid Zone, Kornhole and much, much more!

Clear Channel, X103, Q95, WNDE (1260AM), Hoosier Park Racing & Casino, Irving Materials Inc. (imi) and Gene B. Glick
*Sponsorship packages are still available – please visit www.kammyskause.org!

“There is something unexplainable that happens within us when we reach out and help someone whose needs are greater than our own; this is the heartbeat of Kammy’s Kause.”- Jared Hiner

Kammy’s Kause is a 4p- Support Group sponsored event.  All proceeds go directly to the 4p- Support Group which is a registered 501(c)3 charity organization.
For more information please go to www.kammyskause.org.



The majority of pictures used are courtesy of Photos by Jami.

We do not own the copyrights to the background music. Song by Sugarland titled Stand Up from their album The Big Machine.

Chance to win a free WHS T-Shirt!

With the launch of our new
Wolf-Hirschhorn Syndrome ~ Unique & United T-shirts
we are sponsoring a free T-shirt contest!

Enter here for you chance to win.  We will not share or sell any information you provide.  We value your privacy.  We are not requiring you to “like”, “share” or “comment” publicly.  However, we do encourage you share this on your Facebook and Tweeter accounts to help us spread the word about 4p- & Wolf-Hirschhorn Syndrome and our new awareness T-shirts!

Don’t want to wait to see if you win before getting one of these T-shirts?  Go to our 4P- Store and place your pre-order.  T-Shirts will be mailed out in mid-June!  Order yours now!

Read the Contest Rules & Conditions before submitting your entry.  http://4p-supportgroup.org/?p=2221


Elijah’s Promise

*Article appeared in our 3rd Quarter 2011 Newsletter.

Elijah’s Promise

Kristy P. Kulski-Ingram

People tend not to know what to say when they find out about Elijah – and I understand, I would feel the same way, afraid of saying the wrong thing. Sometimes I am met with awkward silence, other times it is simple confusion and then the dumbfounded direct response, “What happened?!” Because for many people, losing a child is an experience so rare that it is unthinkable that for many it’s simply incomprehensible.

I held Elijah in my arms for a short 7 ½ weeks. For all the brief time, his life and person were and continue to be immense to behold. It took having him for me to understand that Wolf-Hirschhorn, and other syndromes like it, were not personality traits, that knowing Elijah was like knowing sunshine. In a way diverging from his life, his death has held a deep and abiding impact on my very soul. For anyone who may read this after their own loss, my heart sincerely aches for you. I know there have been losses in the support group recently and I wish so dearly that no parent has this experience. While I think every parent fears it, those of you who have nurtured your children through the medical scares of 4p- each day have a special relationship with that fear. I will tell you honestly that I have no tales of saving inspiration. But I know that I only learned that each morning I had to get up, and that I needed a reason. My reason sometimes was my husband. But many mornings it was because I made a promise to Elijah, as I held him quietly knowing my moments with him were rushing away. I promised my son that I would be better because of him. So through him, I was able to find the strength to get up. Don’t ask too much of yourself, just ask that you take the next step. One foot in front of the other.

When people find out about Elijah, what I really want them to say is “Tell me about your son.” Because I still beam when I think about him, I could spend so much time talking about who Elijah was – his sweetest quiet smiles, his wise old eyes. And who his was to me – Elijah was my druid boy, he seemed to understand everything around him and take it all in with an otherworldly calm. Even now, over two years after losing him, I am still the proud gleaming first -time mother I was the moment he popped into the world, even if I cannot hold him with these arms. My son lit up a room; I have never seen anyone draw a crowd like him. His inner calm seemed almost transcendent of the world around us. Elijah gave me so much during his stay, he did things I was told would not be possible – the first of which was to be born. How such a young infant could cast such an aura of wisdom and serenity simply amazes me; and that is what Elijah did, was amaze me every day.

Once you have seen the sun, only another star can ever touch the darkness the same way again. Today I have Elijah’s 8 month old little brother Marcus. It is because of Elijah’s life, because of losing him, I am a better mother, and I am a better human being. And my little Marcus gets double love. It has taken some time to understand exactly what I was promising Elijah that day and I think that it will be a life-long endeavor of discovery. But in this, when I take Marcus into my arms, I know that I am keeping my promise, that Elijah is right there in all the love that I pour.

Remember when I held you aloft in my arms?
And there I kissed your neck and cheeks
And laughed my joy upon the air around us
Then held you high so you knew how to fly
And fly you did, right through my heart and taught me how to live
I can hear the words your eyes speak
And still giggle at your kicking feet
Your tiny hands over my fingers
Perfect pearls.

I can hear the wisdom your heart speaks
Ah, how I love you my little one.

How beautiful those days in the sun.


Our Mission, And How YOU Can Help!

*Article appeared in our 1st Quarter 2013 Newsletter.

The 4p- Support Group’s mission is to improve the access to 4p- information to parents, family members, and care providers of individuals who have a 4th chromosomal abnormality, most commonly Wolf-Hirschhorn Syndrome. We are the only organization with this mission that is recognized by the Internal Revenue Service as a 501(c) (3) charity.

We are more than just a group of parents that talk about our children. We are a support network in the truest sense of the word. Our bi-annual national conference attracts families from around the country, medical professionals from around the world, and provides a one of a kind experience to help educate, share, learn, and grow from. We know that at this conference we are putting together the best concentration of 4p- experts in the world…and those experts include the parents and family members we support. We also sponsor and organize bi-annual regional gatherings that help facilitate communication and information sharing among parents and care givers. It is the bonds that are formed at the national conference and regional gatherings that provide inspiration for continuing the Support Group’s mission. It is because of this, that the Board of Directors sets aside funds at each conference to provide financial support so as many families as possible are able to attend.

Our mission includes education and advocacy to the medical community. This certainly happens at our national conference, but this also occurs throughout each year, and is an ongoing focus for our members. A few examples of our recent advocacy and education include the genetic counselors webinar (archived on our website), attendance at the 2011 American Society of Human Genetics/International Congress of Human Genetics annual meeting in Montreal, Canada, and our upcoming attendance at the 2013 American College of Medical Genetics and Genomics annual meeting in Phoenix, AZ.

Finally, we have formed the premier Scientific Advisory Board, chaired by Dr. Amy Calhoun, MD of the University Of Utah School Of Medicine. Through the work of the Support Group, and the Scientific Advisory Board, we have developed a working relationship with Lineagen (www.lineagen) that lead to a research study conducted at the 2012 national conference that resulted in 4p- individuals receiving chromosomal microarray analysis at little to no cost.

Your annual membership dues to the group help us achieve our important mission and support our unique and amazing community. If you have already paid your annual dues, on behalf of the Board of Directors, thank you. If you haven’t, please consider joining our group today. Payment can be made on our website, or mailed to the address below. Since we are a 501(c) (3) recognized organization, your membership dues, and donations to our group, are tax deductible.

I encourage you to visit our website (www.4p-supportgroup.org) or Facebook page to see all of the activities and projects the group is currently involved in. I have no doubt that you will be impressed!

Thank you for your support!

Jim Shellenberger

Genetic Counselors say “Thank You!”

*Article appeared in our 3rd Quarter 2012 Newsletter.

The week before our trip to Indianapolis to represent the new Clinical Partnership between Lineagen and the 4p- Support Group, I was apprehensive. Megan, Rena and I had filled our days with final preparations by reviewing 4p- Biographical Forms and pouring through countless stories, photos and videos posted online by families from the 4p- Support Group. Before reading the stories I had been excited about our trip. I knew we were bringing a valuable medical service to the families at the conference and was excited to meet all the kids in person. But after reading page after page of negative experiences these families had with the medical community, I began to get a sinking feeling in my gut. What were these families going to think of us? They have had so many negative encounters with the medical profession; will they be wary of us or on the defensive? Will they think we are sticking our nose in where it doesn’t belong? Who am I to think that I can talk to these parents about a condition that I have no experience with, and they live with each day?In retrospect, my apprehensions and questions couldn’t have been farther from the truth. From the moment we arrived, we were overwhelmed with the enthusiasm, openness and support that all the families showered upon us. We talked, we laughed, we cried, we played, we hugged and we learned. We not only learned about 4p- conditions, we learned about the beauty of the human spirit and human resilience. I can already see the effects of that weekend on my attitudes and actions as a genetic counselor: I am more compassionate and I seek the positives in a diagnosis rather than the negatives. So to all the families who were at the conference, I want to say thank you. Thank you for sharing your stories, your kids and your acceptance. Thank you for being wonderful parents, grandparents, siblings and relatives who always strive to give the best care possible to your children. Thank you for not accepting “no” for an answer and for teaching the medical community about what a diagnosis of 4p- really means.


Since Indy….Since returning to Utah, we have sought out ways to share our experience at the 4p- Support Group Conference with our colleagues at Lineagen and the broader medical community. We are in process of submitting a webinar that will be available to genetic counselors across the country and have been brainstorming ways we can formally raise awareness for 4p-/Wolf-Hirschhorn syndrome and the many accomplishments and positive aspects that come with it. In the meantime, we take every opportunity we have to share with our colleagues, friends and neighbors about the wonderful families we met in Indianapolis.When genetic counselors hear a diagnosis, we often call to mind an image of the chromosome, the deletion, and the genetic features….mostly academic things. Now, when we hear the term “4p-“, we think of the unbreakable bonds between these brothers and sisters, the strength and unconditional love of their parents, and the endless amounts of faith, hope, and happiness that fill these kiddos’ hearts.

Our lives are forever changed!

We dance for you,

Rena, Megan, & Mallory

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