Yesterday, I was talking with a friend, who said they were without cable, telephone and water. I was shocked to find out that her husband had trenched through all those connections, when putting in a new sprinkler system. I knew it had all been flagged by the proper utility companies. She said that their 5 year old came in with a “bouquet” of those flags in her hand, while her husband was out renting the trenching equipment. Then, the husband had decided that he could see where the flags had been and trenched without paying for the front yard to be flagged again.
That conversation reminded me of the time, before our diagnosis, that we thought we knew what was going on and had to decide to “trench or wait”. It is sure easier with the right information. I thank each of you who has supported SIP through the last 10 years. It means others have the flags and do not have to dig by themselves. Plan NOW to join us for the 10th annual conference next year!
We will have our 8th Annual American Stickler syndrome conference in the Chicago area, JULY 9-11, 2004, at the Doubletree Club Hotel at O‘Hare. Deadline for registration is June 15. Our selection of great speakers has been aided by Marcia Phillips, RN, DNSc of Rush University. Also, a member of SIP, has found a counselor who will spend some time with the teens at the conference, as well as speak with the conference. This was a special suggestion from the 2003 conference.
More News about 2004 Conference
One of our members, J J Jackson, will be present to autograph his newly published book. JJ has been a friend of Stevie Wonder for a long time, and was asked to write Stevie’s biography. It will be in print in time for this year’s conference and we will have an exciting extra for our conference. JJ shared this information with us, as well as some photos of him with Stevie, at our San Jose conference last year..
INTRODUCING A SIP
I live in Michigan and have been married for 7 years. I have two children, one without and one who has battled Stickler syndrome since birth. I had 8 eye surgeries by the age of 17, 6 laser and 2 buckles. My eyes have been stable since. In the last couple of years, I have progressive bone deteriation in knees, back, and hips. It took a MRI to show the damage and I am under both ortho and rheumotologist care.
My son was diagnosed at birth, due to facial traits, pigeon breast, and knowledge of family history. Ethan has glasses since he was a year old. He has what they call “abnormal” bones, and already shows spurs in his hips. He sees an orthopedist, rheumotologist, and has been in PT (including water PT) , OT, speech, visual and general ed since 14 months. Ethan has shown consistent delays in development his whole life. Between the developmental and medical problems, we qualified for SSI on the first try.
Ethan was recently diagnosed with sensory integration disorder with food aversions. He only weighs 27lbs and is short, so he looks tiny. Since birth, he has had feeding problems. We now know, through trial and error, what textures Ethan can handle and what works for him to get as many calories and nutrients as possible.
To look at Ethan, he is a very active, typical three year old. So, that makes it hard to list his medical problems. Half the time, I forget something (unless I am dealing with something that is not an everyday complication). Compared to a “normal” (whatever that is) child, Ethan has a rough road ahead.
If it were not for Early Intervention, great specialists (that we travel 2 hrs for) who know Stickler syndrome and usual treatment plans for it, ongoing therapy of body and mind, and the connection with you folks that helps me realize we are not alone (and who have great advice), we would have drowned in a pool of sadness for our son and ourselves. But, we now see the light at the tunnel. We are educated and prepared. If it were not for these things, Stickler syndrome would be overwhelming. We are not alone and there are answers for our babies. We still can give them the best life for them, even though they may not know it yet.
Dr. and Mrs. Stickler have generously donated the start-up money for a fund to provide high school seniors, who have a diagnosis of Stickler syndrome, with a four year scholarship.
SIP received a letter from Rick Bishop offering a challenge. He says, “I am pleased to donate to the Gunnar B Stickler Scholarship Fund. I would like to challenge other SIP members to join me in helping build a better future for Stickler youth. If everyone donates $25, $50 or whatever your budget allows, it will help keep this great opportunity for Stickler youth available for a long time.”
“I know of one Stickler family holding a garage sale to donate the money for this worthy cause. You too can be creative and think of a fund raiser convenient for you and your family. You may even want to contact your Human Resources department at work to determine if they will match your contribution. The point is: If we all pitch in and give a little bit extra, we can make a difference for Stickler involved youth.” Rick
Scholarship applications for graduating seniors are on our website. Deadline is June 15.
Conference Financial Aide
- Often a case worker can find funding for a parent to attend an educational conference locally.
- See www.patienttravel.org for financial help with airfare for the conference, or call 1-800-296-1217.
- SIP has a small fund to assist with hotel rental and registration fees. Please contact firstname.lastname@example.org for further information or application form.
For our first several years, we listed names of persons who contributed financially to Stickler Involved People. Then, for several years, we did not. A decision has been made to start listing contributors again. Your gift is tax deductible.
Each year, at the annual meeting part of our conference, we will be voting on the location for the meeting the next year. If you are willing to help plan a conference in your area, or know of a group that can help, contact us TODAY. We will be voting from suggestions. So far, Iowa City (where we held our first ), Denver, or Orlando are ideas. 2005 will be our 10th conference and we really want this to be the biggest and best!
NEWS from Down Under
Glenda Brunings, the group leader for SSaSS, the Australian equal to SIP, reminded us of the journal that Wendy (SSSG in Great Britain) helped to write. Glenda found it at http://www.nursingtimes.net . She registered (free) and was able to copy the article, by just typing “Stickler syndrome” in the search square top right hand corner after registering.
“What all nurses need to know about Stickler syndrome”
Brown, E Brown, J Hughes, W Marland, GR
Nursing Times 2003 Apr 1 99(13):28-29
http://stickler.org/ has the 2004 conference applications!!!!
Websites to notice
The Ukrainian Alliance for the Prevention of Birth Defects has a great website. We are listed at the following:
- http://www.geneticalliance.org/familyhistory/index.html is a site to use to collect family health history.
PRS added to 2004 conference
Nancy Berry writes ”My PRS group is going to have a very informal get together on Friday afternoon. If there are any families with a child with PRS who would be
interesting in our little gathering, please email me at email@example.com. I am going to keep a list going and keep everyone updated about our plans.”
The size of our next check from iGive is all up to you! Those checks are used for aide to persons who could not otherwise attend our conferences. Many causes rely on their supporters to spread the word. If you don’t tell your friends about this easy and free way
to help, who will? Each new iGive.com shopper means an extra $5 donation for Stickler Involved People. That’s on top of money raised by ongoing purchases at iGive.com. There is no added fee for the purchaser. Just send your friends this link, http://www.iGive.com/html/refer.cfm?causeid=168