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WINGS Spring Summer 2009 WINGS WAGR Information, News, Gorilla Stories International WAGR Syndrome Association www.wagr.org P.O. Box 392 Allen Park, MI 48101 Spring/Summer 2009 We continue to pursue grants as well Calling all UK WAGR as creative ways to raise funds for the Families From the organization. The IWSA “End of the Year Ask” letter was very successful The Aniridia Network UK will hold- President's and we plan to continue this every ing their annual gathering in May. year. Jenny Langley, ANUK Secretary and pen WAGR representative would like to Unfortunately the March of Dimes know if there are any WAGR families Michigan Chapter Community award interested in gettting together? Dear Families & Friends, was not renewed for 2009 due to cut backs. This $1,000 grant was used Meeting space would need to be I would like to begin by thanking all in 2008 to offset some of the secured. If you are interested in a UK WAGR Gathering please contact our donors. During these difficult and printing/mailing expense of our news- Jenny at [email protected] uncertain times your kindness and letter. generosity is helping offset many Details of the Aniridia Network UK organization expenses. Just a reminder that our online survey 2009 AGM: "WAGR Syndrome: The Kidney and Date: 16th May 2009 This includes the printing of our Urinary Tract" is currently underway. Time: 10:30am - 4:30pm and op- updated brochures, printing and For more information please visit our tional social event afterwards mailing expense of our newsletters, website at Venue: The Resource Centre, gifts to hospitalized children, general http://www.wagr.org/survey2008.ht- Holloway Road, London operating expenses, rental space and ml. Cost: £10 for adults who are mem- meals for WAGR Weekend, and bers, £15 for adults who are not assistance for families to attend On behalf of the IWSA Board and members. Children go free. WAGR Weekend. Officers we would like to extend our deepest gratitude to Karen Rose and The IWSA purchased the Rose Mallon, two of our founding On the Inside QuickBooks online accounting soft- members, for the time and energy they ware program to help Treasurer, Jeff donated to make the IWSA what it is Silver Linings Pg 2-5 Hefty manage our financial business. today. Group Homes - My story We also purchased Wrightslaw by Caroline Larson Pg 5 Webinar CD’s. The CD’s are avail- The IWSA is a 501(c)(3) organiza- able for our families to check out tion that accepts both financial and NIH Update and Parent Visit Recap when needed. in-kind contributions. Some of the Pg 6-8 in-kind services we are in need of WAGR Weekend 2009 Pg 8 Wrightslaw is the leading website include: legal advisor, Certified Public Nephrology 101 - What every parent about special education law and Accountant, donated or discounted advocacy. Anyone interested in print services, office supplies, gift cards MUST know Pg 9-10 learning more or borrowing the CD’s for sick children and supplies for our Behavior Disorders - Coping with please contact Educational annual WAGR Weekend event. If you explosive or aggressive behaviors Consultant, Rhonda Sena at - can help or know of somebody that Pg 11 [email protected] can help with an in-kind contribution, Winningplease email Attitudes, [email protected] Great Rewards 1 fulfill her dream of being a cheer- receives services from her vision Silver Linings leader. Our town had a new itinerant, who is also her mobility competitive, travel football league teacher. She has an adaptive PE ’d like to share my daughter, along with a new cheerleading teacher who helps to modify things I program. It is a no-cut program, for her in PE so that Kaitlyn can Kaitlyn, with everyone. She is th for kids thru age 13. She did really safely participate. 12.5 years old and in 7 grade. well learning her cheers and Kaitlyn has 2 sisters, 1 brother, performing! Next fall, she will Kaitlyn works hard for her grades, and a baby sibling on the way. cheer again and is looking forward sometimes she does struggle. I’d She is the oldest. We don’t know to it. Thru school, she has been in like to brag on her behalf and let the gender of our baby, but Kaitlyn chorus since 5th grade. Kaitlyn you know that last year she made is hoping for a girl. She is getting loves to sing! Her other school high honor roll for 1st quarter and excited for my induction date of activity is student council. Last then was on honor roll for the rest March 19. Kaitlyn is a great sister, year she was a representative and of the year! This year, she is she loves to help out her siblings, this year she is the fundraising following the same pattern. It is but sometimes tends to be a little co-chairperson. Next year she wonderful to see her hard work on the bossy side! She is the hopes to be the dance committee paying off and knowing that she closest to her 8 year old sister, chairperson. really can do well in school! Lauren, and the two of them spend a lot of time doing things together. As I mentioned, Kaitlyn is in 7th Lastly, I’d like to talk a little bit Joe and I are raising our family in grade. She enjoys middle school. about her health. Her vision is Woodstock, IL. We are about 20 Her school is from 6th-8th grade. It 20/400 and cannot be corrected minutes south of the Wisconsin is hard to believe she’s half way with glasses. She does have and Illinois border. thru middle school. It seems like nystagmus, aniridia, bi-lateral just yesterday I was so worried cataracts present since birth, and Kaitlyn is active in several activi- about her making the transition she developed glaucoma about ties. She has been in Girl Scouts st and if middle school would be too four years ago. She did have since 1 grade; this year is her first overwhelming for her. It has Wilm’s tumor, which was discov- year as a Cadette scout. She is proven not to be! She does like ered on March 17, 1999. We are actively working on earning her school and her friends and activi- rapidly approaching the 10 year Silver Award, which is the highest ties there. Kaitlyn is main- anniversary of the rollercoaster award a Cadette can earn. Last streamed, with the exception of that goes along with a Wilms year, she started taking swim reading and language arts. She is diagnosis. This year when we lessons thru NISRA, which is a in a resource class for those two celebrate her becoming a teen- special education park district. classes, and they are back to back ager, we will also be celebrating She gets one-on-one assistance taught by the same teacher. ten years of her being cancer free! during her lessons. When she first She did end up having a complete started, she was afraid to get her Kaitlyn reads about 2 grade levels left nephrectomy, followed by face wet. In just one year’s time, behind, and she has a hard time chemo of vincristine and dactin- she has mastered going under, comprehending what she’s read. omyacin. We still follow up with front float, and front glide. She’s Some of her IEP requirements are ultrasounds every six months. been working now on her back large print textbooks, with an extra She also gets ultrasounds of her float and front crawl arm move- set at home so that she doesn’t ovaries, and there is no sign of ments. This past fall, she got to have to bring them back and forth them being abnormal. Kaitlyn has to school, a CCTV, another device hallux valgus on both feet, which which has a camera she points at makes it hard to find her shoes things (like the board) and then it that fit. So far, she doesn’t transmits the image to a flat complain of any pain. This spring, screen/panel TV for her to see at we have to take her to a pediatric her desk, enlarged assignments rheumatologist to get a diagnosis on large size paper, extra time for on her hands. She may have tests, reduced assignments (but rheumatoid arthritis. Both ring most of the time she ends up fingers are showing characteristics doing the entire assignment), and of it and she can’t straighten them. two desk spaces so that she can Another journey she is about to sit at one and her textbook and embark on is braces. She goes to materials at the other. She is the orthodontist at the beginning of assigned a one-on-one aide who March to get them put on. Right is with her most of the day. That now she is looking forward to aide was assigned to her at the them, saying how cool they are. beginning of 6th grade and made a We’ll see how long that attitude dramatic difference with how well lasts once the pain sets in. she transitioned. Kaitlyn also Winning Attitudes, Great Rewards 2 Last summer, Kaitlyn was spon- he said “Jen she is not looking at and we had this beautiful blossom- sored by our city’s Lion’s Club to me, you need to take her in to see ing daughter. Ahh, life was great attend Camp Lions, a camp for someone”. Those words hurt but again! We had gotten on the visually and hearing impaired chil- also made me quit denying.
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