Well, the weekend as come and gone and I was so fascinated by the snow continuing to fall that I forgot to blog…

We couldn’t even find my car yesterday morning. 



Look at Emily’s school this morning



 

Enough with the snow!

This week I want you to meet Kent and Kelli. 

1.  Can you tell me about your family?

We are a blended family.  I have 3 children (Kelli 30, Kevin 27, Ethan 22) from a previous marriage and my wife Betty has 1 child, also from a previous marriage (Kristin 31).  We have 3 granddaughters (Shea, 8 and Cali 5 (from Kristin), and Lillian 1 (fromKevin).  Betty and I live in a small town just north of the Kansas City metro area and our children live relatively close.



2.  Tell me about your loved one with cri du chat syndrome/

My daughter Kelli was born with 5p- in 1984.  She had a normal birth and I fell in love with her immediately.  She had a headful of long dark hair.  At her one month well baby check-up, the pediatrician discovered a double inguinal hernia and I was devastated.  We took her to Kansas City’s Children’s Mercy Hospital for the repair operation and when the surgeon gave us his report, he said that the operation went fine, but some people in the operating room did not like the way she cried.  She did have a rather squeaky cry but, being my first child, I did not think anything of it.

Then they sent in the geneticist and he told us he suspected a partial chromosome deletion on #5 thatwould result in “severe mental retardation”.  They drew blood for the genetics test and that began the longest two weeks of my life. Every time I looked at Kelli, I would try and tell if she looked “normal” or not.  When the Genetic Counselor called and invited us in for a meeting, I knew the answer and went home from work to tell my wife in person.  At the subsequent meeting, the Genetic Counselor and Social Work advised us to give up Kelli and put her in a home.  They said she would not be trainable, would not walk, speak, or ever be toilet trained.

Being rather contrarian, we took her home and started researching the syndrome.  I found some rather grim information at the University of Kansas Medical Center library, spending days in their stacks.  We also found an early intervention center, the Infant Development Center at Shawnee Mission Hospital and started Kelli in school at the ripe old age of 3 months.

Since the medical literature was so sparse on 5p-, I started looking for other families in Kansas City to communicate with and share information.  Through our genetic counselor, we did find one family with a boy of about 6 who could walk and we found that encouraging.  Also, at that time there was a publication called Exceptional Parent magazine that had a column devoted to rare conditions and parents could write in and connect with other parents.  I picked up a few names from past issues and every family I found seemed to know one or two otherfamilies.  At the time (1984) personal computers we not yet common and I was working for Apple, so I started building a data base of families that I connected with.  I also picked-up several names from a study that had recently been done by a doctoral student at the Medical College of Virginia.

In mid-1985, I discovered that about 6 families were going to meet at a Holiday Inn Holidome (remember them?) in Indianapolis on a Saturday in August.  We jumped on an airplane and joined them.  We all sat in a circle by the pool with the kids trapped in the middle and shared our experiences (talking very loudly), cried, laughed, and made dear friends.  At the end of this day, I wanted more.

I wanted to invite all of the families we could find to share their experiences.  I wanted to bring inmedical professionals who had worked with our kids.  I wanted that doctoral student to give us her insights as she had seen more kids with the syndrome thananyone in the world at that point.  I wanted hope.

I organized our first meeting with parents and professionals in Chicago in Aug 1986.  From this meeting, the 5p- Society was founded and incorporated as a not-for-profit group.  The Society has organized a national conference each year since.  This July 2015 we will host our 30thconference in Indianapolis, my first visit back since meeting that brave group of parents so long ago.

 

3. Tell me about doctor appointment, therapies or school.

At this point, I don’t remember much about Kelli’s doctors except that she had a bunch and they all treated her great.  We had to help them keep their expectations high for Kelli and we did this by telling stories of other kids with the syndrome that we had met.

Kelli attended the Infant Development Center for 4 years and then moved into the public school system.  Over the years, we had the typical challenges with the school district not wanting to provide therapies or a classroom aid.  She had some great and loving teachers and some not so much.  It was a time of exuberant highs and frustrating lows, but Kelli endured and so did her parents.

 

4. Tell me a success story.

Kelli’s life is a success story.

 

5. What else would you like the world to know?

Kelli now lives in a group home in suburban Kansas City.  I believe this is the best environment for hercontinued growth.  It is not as clean or as homey as I would like but Kelli is treated with love and respect and is happy.

Oh, by the way, she does walk, and talk, and smile, and laugh.



Thank you Kent for stopping by and chatting with me!