2014 Memorial

As a continued tradition at our National Conference and also at Kammy’s Kause, we will be remembering and celebrating individuals with 4p- who have received their wings.  During the National Conference, we will have a table set up to showcase the names of our angles so families can pay their respect.  The annual tribute ceremony at Kammy’s Kause will take place on August 23rd.  To ensure we included your child or loved one please fill out the form below.  If you have submitted your child’s name in the past, you do not need to resubmit their name.  You do not need to attend the ceremony in order for us to honor your loved one’s memory.

Your Name (required)

Email (required)

Phone Number

Address (required)

City (required)

State/Providence (required)

Zip/Postal Code (required)

Country (required)

Child's First and Last Name (required)

Date of birth (required)

Date of death (required)

 

4p-/Wolf-Hirschhorn Syndrome Awareness Day Video

Please choose the HD option at the bottom right corner of the video screen which appears after clicking play!

 

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.

Fall 2013 Unique & United T-Shirt Contest


Many of you have already ordered and received the new 4p-Support Group T-shirts.  So now it’s time to start wearing them!  Our goal is to spread awareness and support for 4p- and the best way to do that is YOU and your “Unique & United” T-shirts.  So get your shirts on and get out there!  Take a picture of you, your child, or the whole family sporting your snazzy new “Unique & United” T-shirt.

Where can you wear your shirts?  Well whether you’re headed to the Grand Canyon or the grocery store, to the Coliseum or the cardiologist, white water rafting or the water sprinkler outback….the possibilities are endless.

Represent 4p- across America and around the world!

The most “unique” photo will win a prize!

Submissions must be received by Dec. 15, 2013.
There will be 3 contest winners:

1st prize- $200 Visa gift card

2nd prize- $100 Costco gift card

3rd prize- $50 Visa gift card


If you don’t have a “Unique & United” T-shirt yet, no worries! T-shirts are available in adult sizes, youth sizes, and onesies for $13.00 through our online STORE. Note that XXXL Adult is priced at $15.50.

*By submitting your photo, you are authorizing use of your photo by the 4p-support group.  Click here to read the official contest rules and conditions before submitting your entry below.

A collage of the photo entries will be displayed during our
2014 National Conference!

View the contest entries here!

 

Your Name (required)

Your Email (required)

May we post your photo to our website? (required)
Yes No 

May we post your photo to our Facebook page? (required)
Yes No 

I accept the terms & conditions of the contest. (required)

Your Message

Your Entry Photo

 

 

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

Up for Auction: Happily Ever After Photography – Family Portrait Session in IL!

We received 2 photo session gift certificates to be used to raise funds for the 4p- Support Group, a 501c3 non-profit organization, in memory of AJ Garner who was diagnosed with Wolf-Hirschhorn Syndrome.  We have placed one of the gift certificates on eBay to allow anyone to bid on it. Please note, the photographer is located in Woodstock, IL and can travel to all of McHenry, Kane and Lake counties. The value of the session is $250 each certificate.    CLICK HERE TO GO TO THE EBAY LISTING

The money raised for this certificates will be used to help cover the costs of providing a SibShop at our 2014 National Conference.  The needs of 4p- siblings are often overshadowed by the intensive focus on the 4p- child since they have the most obvious physical, mental, or emotional needs.  The purpose of SibShop is to allow these siblings to be able to meet new friends, reconnect with old friends, play and have fun, interact and have discussions on what it is like to have a sister or brother with special needs.  This is a very important session and can make a positive impact on a sibling’s life.

We are offering the other gift certificate to any individual who has been diagnosed with 4p-.  The certificate can be used to celebrate a birthday, senior pictures or pictures with their siblings and parents.  In exchange we ask that you allow us to post one of your photos from the session in our newsletter and write an article to include with it.  The article can written by their sibling about having a brother or sister with 4p- or a parent can write about anything related to their child with 4p-.  Certificate expires April 1, 2014.  If you are a 4p- family interested in this opportunity, please contact Amanda Lortz at president@4p-supportgroup.org on or before September 30, 2013.  In your message explain how you intend to use the gift certificate and include your 4p- child’s name and age.  Please keep in mind this photographer is located in Woodstock, IL and you must be able to travel to her or a location within the above mentioned nearby counties in IL.  The winner will be chosen by a random drawing and announce on on before October 4, 2013.

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
12:00PM-7:00PM = KAMMY’S KID ZONE
2:30PM = Arrival of KAMMY’S RIDE
3:00PM = 4p- FAMILIES
3:30PM-4:30PM = 350 West
4:00PM = KAMMY’S KORNHOLE
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!

SPECIAL THANKS TO OUR SPONSORS:
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.

https://www.facebook.com/kammys.kause.3

https://www.facebook.com/events/598471360171437/

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

CONTEST ENTRY IS NOW CLOSED.

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.

 

Site Design by:http://www.onlinstarsolutions.com