Kammy’s Kause 2012

March 5, 2012 By Amanda Leave a Comment

Please join us for Family Fun Day

July 21st during our 2012 National Conference

American Legion Park, Fortville, IN

Information & maps available at conference

Saturday, July 21 – 2:30p – 7:00p

2:30p Depart hotel
3:00p Arrive at festival
3:00p – 5:00p Festivities
5:00p Cookout
7:00p Depart for hotel

Dinner and transportation will be provided to conference attendees.
Kammy’s Kause is an outdoor concert event featuring live music, food, and an interactive kids zone.
We will also be having a Butterfly Release Ceremony in memory of deceased 4p- children.

Click here to get customized directions!

View Kammy’s Kause – American Legion Park in a larger map

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WHS Awareness Car Magnets – Reserve Yours Now!

February 26, 2012 By Amanda 1 Comment

We are now taking pre-orders for our new Wolf-Hirschhorn Syndrome awareness car magnets. A discounted price is given for orders of 3 or more magnets!

CLICK HERE TO RESERVE YOURS NOW!

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Participants Needed for Growth Research!

February 24, 2012 By Amanda 2 Comments

We want you to know about an opportunity to participate in a research study. Our group is collaborating with Drs. Amy Calhoun and John Carey at the University of Utah, co-chairs of our Scientific Advisory Board.

As you know, most people with 4p- have significant growth problems. Therefore, the usefulness of standard growth charts for people with 4p- is limited. Plotting growth points on an appropriate growth chart is a key piece of well-child care, but using typical charts for patients with 4p- may fail to alert his or her care provider to a growth-related health problem, such as a hormone deficiency. Specific growth charts for people with other genetic syndromes, such as Down syndrome and achondroplasia have proven helpful to their care providers.

The purpose of our study is to collect growth data from persons with 4p-/Wolf-Hirshhorn syndrome in order to construct growth charts specific for 4p- / Wolf-Hirschhorn. All data from our members is extremely useful, even if the child or adult with 4p- has passed away.

As a member of the 4p- Support Group, we felt you might be interested in participating in this approved study. Participation information on this study can be found on our website www.4p-supportgroup.org, including the consent documentation and instructions for submitting the growth data if you are interested. Requesting information on the study or agreeing to be contacted about the study does not enroll you in the study.

Below is a presentation given by Drs. Carey and Calhoun during the 2010 4p- National Conference discussing the growth research project and answering questions from parents. *We apologize for the background noise. We always allow our parents to bring their children into the presentations during our conferences.

Learn more and enroll in the growth research.

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Custom 4p- & Wolf-Hirschhorn Jewelry Fundraiser

February 23, 2012 By Amanda Leave a Comment

We’re excited to announce a fundraiser with The Jewelry Chicks.

Money raised through this fundraiser will be used towards our 2012 National Conference, specifically towards the sibling activities we have planned. Mention code CONF when you place your order.

These custom made necklaces and keychains

are receiving rave reviews within our community!

The Jewelry Chicks specialize in made to order jewelry. Beads, Bezels and Metal Stamping pieces made to your preference. See one of their pieces that you like- but would prefer another color, style or length- let them know…The Jewelry Chicks are here to make your vision for the perfect jewelry piece come to life. If your child has 4p- but does not have Wolf-Hirschhorn Syndrome they can stamp whatever you want, whether it’s 4p- Syndrome or your child’s specific deletion. The sky is the limit with these pieces!

Necklaces are $28.00 and can be made in silver or copper.

$5.00 of each necklace sale will be donated to the 4P- Support Group.

Keychains are $25.00.

$4.00 of each keychain sale will be donated to the 4P- Support Group.

The best way to place an order is to send an email to thejewelrychicks@yahoo.com and mention the code CONF. They will take care of finding out exactly what each family is looking for and how they would want their items personalized. They will also handle payments from the families and shipping to the families. At this time, they are unable to ship outside of the US.

More information about The Jewelry Chicks and more pictures can be found at

http://www.etsy.com/shop/TheJewelryChicks and https://www.facebook.com/pages/The-Jewelry-Chicks.

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Silly Safaris Show – July 20th

February 21, 2012 By Amanda Leave a Comment

Do you want to get really close to some amazing animals? Would you like to touch some of your favorites? Then join us on a Silly Safaris Friday, July 20th during our 2012 National Conference.

Amazon John, Coyote Chris and all of our other funologists are lively, interactive characters so unique and refreshing you will be amazed how they appeal to all ages. A Silly Safaris Show is a high-energy and zany theatrical performance. We are the most interactive performers around. You’ll see all the animals and everything they do. Children and volunteers join them on-stage in games and various fun activities. Everybody is entertained and engaged in the action. Each animal, each game, every interaction teaches something simple about nature and the world around us. Children crave to be close to animals and you never know what to expect when you go on safari. You’ll be having so much fun you won’t notice that you’re learning facts about animals.

Silly Safaris Shows bring a variety of animals–mammals, reptiles, birds, amphibians, and yes, BUGS. Our approach is warm, inviting, and playful which leads to effective and rewarding entertainment. Our philosophy celebrates the children who help us on stage and the audience joins in the fun. Become a lizard, smell a ferret, hypnotize an alligator, and hug a rabbit. Everyone is entertained together as lasting positive memories are created. The trained animals always offer their best and every audience responds as they share in the gift of interactive play. Join Amazon John, Coyote Chris or one of our other funologists on a Silly Safaris soon — it’s fun for everyone and a wonderful experience to share with friends, family, and animals.

www.sillysafaris.com

The 4P- Support Group would like to thank Amazon John

for generously sponsoring this event!

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2012 Butterfly Release Ceremony

February 7, 2012 By Amanda Leave a Comment

We will be having a Butterfly Release Ceremony to remember and celebrate our 4p- children who have received their wings. The ceremony will take place on July 21st at Kammy’s Kause during our 2012 4p- National Conference. Please fill out the form below to have a butterfly released in your child’s memory. You do not need to attend the ceremony in order to have a butterfly released in your child’s memory. If you would like to ask a family member or friend who will be attending the ceremony to release the butterfly for you, please indicate that below in the Butterfly Releaser’s name field. We will be mailing each parent a memento of the ceremony after the event.

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Reflections of our First 4p- Conference – 2010

January 11, 2012 By Amanda Leave a Comment

My husband Matt and I attended the conference in Utah this summer with our son Frank, who was eight months old at the time. We were “first-time” attendees and were very unsure of what to expect. We weren’t sure how many people would be attending, whether we would find the information useful to us, or even whether we would find it encouraging or discouraging to see other people with 4p-. But we decided to leave the older kids with grandparents and head out, figuring at least it was a weekend away somewhere we’ve never been before.

Prior to the conference, I had only briefly met one other child with WHS, and my husband had not met anyone, and the one thing we were most hoping to come away from the conference with was a “snapshot” of what our son’s future would look like. I was unprepared for the emotion that overcame me when I walked into the banquet room the first night to see so very many precious faces of people who were loved enough by their families to be flown or driven there for the weekend. Most of the families we talked with over the next couple of days were so encouraging and positive. It really caught me off guard to be perfectly honest. I don’t know if I was expecting some sort of survival mode or what exactly, but the upbeat spirit of the families is what I think of first when friends ask me, “How was the conference?”

We saw a wide range of physical and developmental abilities, and although it was great to see the reality of this syndrome, the reality is that the developmental abilities are quite varied. So although we were hoping to get a snapshot of our son’s future, we instead got a snapshot of our own. I am much more confident that we can handle this, and not just handle it but continue to thrive as a family.

*Article appeared in our 3rd Quarter 2010 Newsletter.

Filed Under: Featured Articles Tagged With: 4p- syndrome, wolf-hirschhorn syndrome

An Amazing Connection Made

January 10, 2012 By Amanda 4 Comments

You won’t believe what I‘m about to share with you, I barely do! My husband, daughter Elizabeth and I went out to lunch yesterday, a place we go to once every few weeks. They usually give us the same table which has a big space by the side for us to place our pram (estate is precious/expensive here) but yesterday it was occupied.

I happened to look at the two people sitting at that table and something told me instantly that the boy has WHS. It’s not the first time I’ve seen a boy and wondered if he had WHS, having the common facial features, but to approach someone and not only takes courage but not everyone likes to be approached about personal and private matters.

My husband thought I was right, and he agreed with my compelling hunch that I should go over and ask. I didn’t want to interrupt their lunch or if she got angry at my approach and shouted at me I wanted it to be in a less crowded place so I waited until they paid the bill and asked them on their way out.

“Excuse me, I was sitting across the way from you and would like to know, does your son have special needs?”, “Yes”, she replied, “why?”. “Does he happen to have 4P-?” and she said “4P what?”. Immediately I thought, “oh no she has no idea what I’m talking about and I’m so embarrassingly wrong, I should just turn around and politely say thank you and goodbye”. So I repeated myself and the hairs on my face stood on end when she said “oh yes, how did you know?”. Amazing or what?????

I was holding Elizabeth, I thought I’d arm myself with her so I didn’t seem like a crazy woman and could explain myself! She said her docs had told her there were no other 4P- children in Hong Kong but I don’t know when they told her, her son is 11yrs. We swapped much info, mainly talking about the well-being of our children and agreeing about our concerns. All along I was trying to figure out if she would mind me asking her for her number so we could keep in touch but before I could she asked me.

She invited me over to their home when we’re all free, saying she has no “job” and has lots of free time. Her son went to the same school as Elizabeth’s but in a different location, he now goes to the only English speaking school in Hong Kong for special kids (I was told it’s private). Her son, Jimi, is pretty high functioning. He can feed himself with a fork or may be even chopsticks, can chew and swallows with no problem and sits quietly looking around at his surroundings.

Had I not looked at our “usual table” I don’t think I would have noticed him. After meeting him I noticed that his body and face gestures are very much like other WHS kids of that age that I met at the US conference and the UK conference. He answered simple questions and said hello despite being very shy, he wanted to hide behind his mum but was intrigued by Elizabeth and wanted to hold her hand.

As you might imagine I was astonished to have met this other 4P- family and in the manner that we did. We have met so many doctors (since having Elizabeth and dealing with her many symptoms) but yet only two of them have told me they had met another 4P- child in Hong Kong but had not seen them in recent years. Our geneticist said in his 20yr career he has seen about ten 4P- children in Hong Kong.

We’ve never met any other 4P- families in Hong Kong but we’re so grateful for all the other 4P- families who are able to make it to US and UK conferences, having not met all of you I wouldn’t have had the experience to have recognized this family and now I feel we have our own tiny support group!

Yin, Robby and Elizabeth (Oct’ 2008)
Hong Kong

Filed Under: Featured Articles Tagged With: 4p- syndrome, wolf-hirschhorn syndrome

Cookies For A Koz

November 17, 2011 By Amanda Leave a Comment

cookie for a koz!

4P- Support Group Holiday Fundraiser, 10% of purchases will go to our group!

This season we’re partnering with Cookies for a Koz, in a fund raising effort for the 4p- SG, to supplement the expenses of our upcoming 2012 National Conference. Visit http://www.cookiesforakoz.com to purchase delicious “fresh baked homemade” cookies this holiday season. A portion of the proceeds will go to the 4P- Support Group and a portion goes to the Starlight Children’s Foundation.

Just note in the personalized note/comment section of the order process: “4P- Support Group.”

The cookies come individually wrapped and beautifully packaged in gift boxes. The cookies make great gifts for teachers, therapists, family and friends. Because they are individually wrapped, they also make great holiday party favors!

Thank you for your support! We wish you and yours a very happy holiday season!

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Craig Richardson: A Life Worth Living, With Disabilities

October 25, 2011 By Amanda 1 Comment

As the mother of a child with Wolf-Hirschhorn Syndrome, I experienced most of the emotions possible in parenting Craig over a 25-year period, including shock, sadness, confusion, fear, crisis, overwhelming love, grief, anguish, numbing fatigue, anger, joy, pride–the list goes on and on. When he was three, I wrote the letter to Exceptional Parent Magazine which facilitated the networking of other families, and the start of the 4P- Support Group. As a nurse, I experienced and observed the other side of “patient care” constantly, evoking more emotions of gratitude, dependency, neediness, and disappointment at times with the medical community. When Craig died, I began writing his life story, and I focused heavily on those emotions, because they were so intense in our lives.

I have published this memoir to share our family’s journey with others, especially those who are on their own unique pathway with a 4P- child. A huge issue for families is balancing the needs of each person, especially the siblings of the child who, by necessity, commands a disproportionate share of the attention and resources. Keeping my own “sanity,” our marriage alive, and our family “doggedly happy,” as I describe us, was a struggle, especially at the many times of crisis we had. I include the coping strategies we used to carry us through, with the hope that others can gain encouragement and strength for all they need to do to help their child reach their full potential, and keep their entire family thriving.

I would love to hear feedback from anyone who reads Craig’s story, and about your own situation. I also have a blog at http://craigrichardsonalifeworthliving.blogspot.com if anyone would like to post something there. You may notice that the title of the blog is shorter than the title of the book; a friend highly recommended I add “With Disabilities” to the title, to further define its genre.

Rebecca/Becky Richardson

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