*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.

 

*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
Treasurer

*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.

~Mallory

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

*Article appeared in our 4th Quarter 2012 Newsletter.

Message from Jared Hiner, Founder of Kammy’s Kause

and our First Recipient of the 4p- Innovator Award

Hello everyone.

First and foremost I would like to thank each and every one of you that attended or contributed to this year’s Kammy’s Kause. Because of you we had our most successful event ever! This year was very special for many reasons, the main reason being all of the 4p- families that were able to attend. This was extremely exciting for me as we were able to show the world what we have built right here in Fortville, IN. This was our 9th Annual Kammy’s Kause… crazy to think 9 years have gone by already. I’m not quite sure if all of you fully grasp what we have accomplished in those 9 years but hopefully we all gained a little perspective by the outpouring of support we received from the 4p- Support Group this year. I wanted to make this year a spectacle unlike any previous year… and we did just that. When I motioned for the 2012 4p- National Conference to be held here in Indy back in 2008 I knew what I was getting us in to. I knew that we had several mountains to climb, rivers to cross and uncertainties to erase. We did just that. After 9 years of sweat, tears, blood and sleepless nights I have realized that we are just getting started. For the hugs, smiles and love we receive in return are worth every arduous step we take on this journey together. To exemplify the gratitude for our tireless dedication I accepted the first ever 4p- Innovator Award on behalf of Kammy’s Kause at this year’s National Conference. This is the first award of its kind globally and WE were the recipients. How amazing is that!? So again, THANK YOU to all of you. Without you, this would not be possible. We are very excited to announce that next year, 2013, will be our 10th birthday/anniversary!! So start spreading the word.

Now for the totals: the cost of this year’s event was slightly higher than previous years due to the National Conference taking place here in Indy. That being said, we still surpassed our previous totals. With one final check on its way to headquarters we are sitting at just under $24,000 raised for the 4p- Support Group! Which puts us at over $113,000 raised in our 9 years! To put this into perspective please remember that this Support Group was operating off of roughly $800 a year before we started Kammy’s Kause. We have become the largest 4p- research and support contributor and I fully intend to keep us that way. So please, if you wish to help, do so. Talk to your bosses, businesses, neighbors, friends… WE NEED SPONSORS! Sponsors fund the event so every penny that YOU donate can go directly to the 4p- Support Group. All of the information regarding Sponsors, Silent/Live Auction items, donations and volunteering can be found in the links above. I would like to take this final part of my message and thank a few key people: Aleah Wade, for being the best Event Coordinator anyone could ever ask for; Rob & Lynn Louden, for being amazing parents/grandparents and supporting this crazy idea since it’s conception; Lowell & Kathy Fisher, for man-handling the Merch booth and making the Kidzone better each year; Melissa Hawkins, for staffing and running the entire volunteer department; Ryan Snider, for….well… he is the Godfather and his Sekurity system is pretty much top notch; Zak Crickmore, for our classified reasons; Robby Kendrick, for the amazing kustom bicycle and numerous other things; Sally Kennedy, for simply taking over the Silent Auction and rockstar’ing it; Kammy Wade & Rosie Kendrick, for the always popular hand-made tie-dye shirts; Dave & Amanda Lortz, for always believing in us and ALWAYS supporting us; Fred Catron, for holding our first ever Live Auction; Jeff Cox, for stepping up and putting on the best Kammy’s Ride we’ve ever had; and most importantly, Kamdyn. Without her, none of this would be possible. Thank you my sweet daughter for inspiring me each and every day to be a better person, to help those in need, to be thankful for what I have been blessed with, to love unconditionally without hesitation or question and to always smile. You see, smiling is the most contagious thing in this world. Go ahead, give it a try. Thank you again everyone, from the bottom of our hearts, thank you.

Stay Kind,
Jared Hiner Father, Founder & President, Kammy’s Kause

As always, the 4p- Support Group’s regional gatherings are FREE to members of the 4p- Support Group.  4p-/WHS parents who are not members of the 4p- Support Group are also welcomed to attend.  4p- children and their families are welcome to attend as many, and any of the gatherings that are taking place throughout the country.  Please note, extended family members and friends may need to pay for their costs depending on what activities have been planned.

Visit our event page on Facebook too!

 

REGION 1

(ME, VT, NH, CT, PA, DE, MA, NY, RI, NJ, QC, NB)

The Region 1 gathering will take place at the Parish of St. Elizabeth Ann Seton in Bear, Delaware.

Lunch will be served. Events for the day are still being planned. More information to come.

To RSVP or for questions:
Brianna Hauck, Region 1 Director
region1@4p-supportgroup.org

 

REGION 2

(WV, VA, FL, GA, TN, NC, SC, AL, MS, KY, MD)

Date to be announced soon.

The Region 2 Gathering will be hosted by Lance and Tiffany Miller in Tuscaloosa, AL on a Saturday sometime in June.

Optional dinner Friday night for meet and greet. Each guest will be responsible for their own bill.

Saturday’s gathering will be held at the RISE in the ADA accessible common area.  Tentatively, the schedule will be:  breakfast, discussion time, a catered lunch, followed by another discussion time.

Lance and Tiffany request that you RSVP for this event as much planning will be necessary.

RSVP region2@4p-supportgroup.org or 205-242-3881.

 

REGION 3

(ND, SD, NE, IA, MN, WI, IL, OH, MI, IN, MB, on)

OHIO

Make plans to join us for a 4p- family retreat June 7th to June 9th!  The retreat will take place at Deer Creek State Park Lodge and Conference Center at 20635 State Park Road 20, Mount Sterling, Ohio, 43143.

Get Directions: http://mapq.st/W44pzH.

To RSVP, please email president@4p-supportgroup.org and region3@4p-supportgroup.org so we can send you a registration form.  If you end up needing to cancel your registration please let us know ASAP.

For more information please see our Facebook event page: https://www.facebook.com/events/210716412408062/

For Questions please email region3@4p-supportgroup.org.

 

MINNESOTA

This Region 3 gathering will take place at Steve and Kathy Sjodin’s home in Ham Lake, MN.

Lunch will be served.

To RSVP or for questions:
Bryan Binstock, Director at Large – dal1@4p-supportgroup.org
Steve and Kathy Sjodin – kssjodin@aol.com

 

REGION 4

(TX, LA, OK, AR, MO, KS, CO)

The Region 4 Gathering will take place on July 20^th at 11am at Fleming’s house in Wylie, TX.

Lunch will be served.

To RSVP or for questions:

Betty Fleming, Region 4 Director

region4@4p-supportgroup.org

 

REGION 5

(WA, OR, AK, MT, WY, UT, ID, BC, AB, SK)

UTAH

This gathering in Salt Lake City, UT will be taking place early in the spring instead of the summer.

The gathering will take place at Lineagen’s office.  There will be a brief presentation by Drs. Battaglia and Carey, experts in 4p-/WHS, followed by a meet and greet. Lineagen genetic counselors will also be available for any families who wish to have CMA testing done through the 4p- Support Group & Lineagen Clinical Partnership. (Please bring an updated version of your child’s 4p- Biographical Form and your insurance card if you are interested.  Bio Form can be found here.)

Note: On Saturday morning at 10am there is a St. Patrick’s Day parade at the Gateway Center (Downtown) followed by a Siamsa (Irish festival with food, live music and dancing). If families who are coming are also interested in meeting up at this event let us know!

To RSVP and for questions please contact:

Tad Tidwell, Director at Large
Please text to 801-310-6804

dal2@4p-supportgroup.org

and

Mallory Sdano
801-931-6228
msdano@lineagen.com

OREGON

The Region 5 Gathering will take place on June 22^nd at the Shockley’s house in Silverton, OR from 12pm-3pm.  Activities planned are a backyard BBQ, play structure, trampoline, good conversation, support and friendship for WHS families in this area.

Please RSVP or for questions:

Caitlin Shockley, Region 5 Director

region5@4p-supportgroup.org or 503-881-9814

 

REGION 6

(HI, CA, AZ, NV, NM)

The Region 6 Gathering will be held June 29th starting at 11:00 a.m. and going till evening. It will take place at the Kidspace Children’s Museum in Pasadena, CA. located at 480 North Arroyo Blvd. Pasadena, CA 91103. Following is the link to the website. This event is free to immediate 4p- family members. Extended family members and friends attending will be asked to pay for their costs. Afterwards, I will have a get together at my home which is approximately 9 miles away. Lunch at the museum and dinner at my house will be provided. Thank you and hope to see you there.

www.kidspacemuseum.org

To RSVP or for more information please contact Denise Barnes at

818-468-8671 or email at region6@4p-supportgroup.org.

Para informacion en Espanol con respeto al grupo de suporte de cromosoma 4p- (Wolf-Hirschhorn Sindrome) y la reunion regional; llame a Denise Barnes a (818) 468-8671. Gracias.

 

 

Geneticists, Genetic Counselors and other professionals:  If you’re planning to attending the American College of Medical Genetics and Genomics annual meeting located in Phoenix, AZ in March please be sure to visit us at booth #834.  Rena Vanzo and Amanda Lortz will be manning our exhibit, and Drs. Carey and Battaglia are planning to stop by often during the meeting as well.  We will be happy to speak with you and answer any questions you may have.  We are also planning to have a couple of families who live in Phoenix at exhibit with their 4p- children.  We look forward to meet you!

Hi 4p families! Leanne Yates is doing a fundraiser selling hand-tied embroidered fleece blankets. She will be donating 10% of the sales from the blankets to the 4p- Support Group. The blankets are beautiful, soft, and so cozy to cuddle up in. Please share this fundraiser with your friends. The more who see it, the more money we can raise! Each blanket is made with 2 yards of soft fleece, you can chose your blankets colors; 1 solid color for each side. They will be personalized with the 4p- logo and you can add a name. The cost of each blanket is $60, plus $5 for shipping. Please leave a post on the event page for Leanne Yates with your color choices and name choice and how she can contact you for payment. This photo shows the blanket in baby blue and white for her son Justin.

https://www.facebook.com/events/166229530186936/

Hello, all! I’m so excited to be sponsoring our group’s holiday fundraiser this year!  The product we will be selling is Scentsy – wickless candles, warmers, and many other fragrance products.  The warmers and wax are great for anyone but especially nice in homes with children and pets as there is no soot, lead, or flame; and the wax never heats up enough to burn skin.  There are over 80 scents to warm plus most of these come in other forms like room sprays, antibacterial fragrance foams, and scent circles.  Rheyn and Paizley (my little ones) especially enjoy their Scentsy Buddies.  These are plush animals that each come with a scent pack of your choice to zip-up inside.  They are super soft, smell great, and might even help your child feel more at ease during rest times.  Try using one of the body sprays on yourself from Scentsy’s bath/body/laundry line then putting the same fragranced scent pack into your child’s Buddy.  Scent is the best link to memory!  If little ones are trying to sleep and smell that familiar scent, it may make their rest process a little smoother.  Most of the regular-size Buddies are also Buy One Get One Free for the next couple of months, as are the antibac fragrance foams.  This is an awesome deal to go along with our awesome fundraiser!  Please take a look at my website below and just click the purple “join party” button next to our party: “4p-/Wolf-Hirschhorn Fundraiser” before shopping so that 20% of each order will be donated to our group.  Please share this info with your friends and family and don’t hesitate to message/email me with any questions!

https://afryka.scentsy.us

Also, anyone who wants to take orders in-person by order form from those local to you, please email me at WishingForWickless@gmail.com and I will mail you a fundraiser packet with everything you need for that. The deadline to order online and get items by Christmas is December 18th but we will continue to have the fundraiser open online until the end of December for those who don’t mind getting their items after the holiday.

Thank you for your participation!
Afryka Manning, mom to Rheyn (rain) who’s 4 and has 4p-.