HI there. My name is Kathy O'Rourke, and my daughter Emma was born with a RBPI in 1999. She is now 12 and, after three surgeries, is doing great. With the help of Emma's therapist, I started a Chicago support group back in 2000 that brought together various BPI parents around the midwest. At our first meeting I met a woman named Jennifer Englehardt who has a daughter who suffered from a BPI and a man in his 50's named Michael Turano who had never before met anybody with the injury he lived with his entire life. That moment changed our lives. Our group helped us and others promote awareness of this injury for the next 7 years. We had several monthly meetings, annual picnics with Dr. Nath, holiday parties, etc. Unfortunately, our group lost its groove when Michael died suddenly, and shortly afterwards, Jennifer was diagnosed with breast cancer. Jennifer fought very courageously but lost her battle with this disease two years ago this month. Without Jennifer and Mike, our group lost momentum and became innactive.
Now that my daughter Emma is recently back in therapy I've been surprised to find that parents of children born with this injury today are just as in the dark as we were 12 years ago. Luckily, I have the same therapist helping Emma who we started with 12 years ago, and the two of us, along with other members of the group, are trying to reinvigorate our support group. We know it would be beneficial not only to new parents but also to us "old" ones as we learn about new issues our children face as they get older.
So, to keep this brief, we are looking for all you Chicago/Midwest (and anyone else for that matter) folks who would be interested in meeting to talk, vent, cry, learn, laugh and make friendships. We are hoping to get together in early October. If you are interested, please send me an e-mail, kathy.orourke@yahoo.com. We are looking forward to seeing old friends and meeting new.
Looking for Old Chicago group?
Re: Looking for Old Chicago group?
Hi Kathy
I am a TLPBI not birth but I live an hour north of Chicago. I would be very interested in attending a group get together if you found some Chicago area people. My injury happened to me just before my 18th birthday. Adult hood has all new struggles, especially with child birth and raising children. If you found anyone and you are still interested in doing something please let me know.
Kathleen Herff
I am a TLPBI not birth but I live an hour north of Chicago. I would be very interested in attending a group get together if you found some Chicago area people. My injury happened to me just before my 18th birthday. Adult hood has all new struggles, especially with child birth and raising children. If you found anyone and you are still interested in doing something please let me know.
Kathleen Herff
- richinma2005
- Posts: 861
- Joined: Thu Sep 29, 2005 12:00 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.
Re: Looking for Old Chicago group?
Iv'e recently saw someone posting something recently, but there is fairly recent activity on the facebook page for chicago BPI, perhaps that would be a good place to start?
http://www.facebook.com/TheUBPN?sid=145 ... 2671694796
http://www.facebook.com/TheUBPN?sid=145 ... 2671694796
Re: Looking for Old Chicago group?
Thanks for the info. I did check it out and it's for OBPI. But again thanks for the info.
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- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Looking for Old Chicago group?
...just a thought..., :
I have found that TBPI'S and OBPI's have alot in common and can and do help one another. We are all one BPI Family. If somewhere you find it best to combine to make a group you will be amazed at the things like "Pain management" , "life activities of daily living(hygiene stuff) doing/learning doing with one-handed-ness " is possible to learn, for example.
off my soap box now
"bossy" gramma Carolyn J
LOBPI/73+
I have found that TBPI'S and OBPI's have alot in common and can and do help one another. We are all one BPI Family. If somewhere you find it best to combine to make a group you will be amazed at the things like "Pain management" , "life activities of daily living(hygiene stuff) doing/learning doing with one-handed-ness " is possible to learn, for example.
off my soap box now
"bossy" gramma Carolyn J
LOBPI/73+