Claire Wiegand's Story: 2020 - 2021


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Claire's Story: [1989] [1990] [1991] [1992] [1993] [1994] [1995] [1996] [1997] [1998] [1999] [2000] [2001] [2002] [2003] [2004] [2005] [2006] [2007] [2008] [2009] [2010] [2011] [2012] [2013] [2014] [2015] [2016] [2017] [2018] [2019] [2020]

Claire's 32nd year was filled with changes for her. After her 22q13 deletion/Phelan-McDermid Syndrome diagnosis in April 2020, we learned that she needed to be checked for Ring-22 as well. In September 2020, she was diagnosed with Ring-22, which is only found in about 11% of cases of 22q13 deletion/Phelan-McDermid Syndrome. Ring-22 is the condition of the short and long arms of her damaged 22nd chromosome attaching to each other to form a ring.

Having her 22nd chromosome in a ring formation makes it very susceptible to replication errors when her cells split and the DNA inside them replicates. A replication error can cause the DNA segment that protects against neurofibromatosis 2 (NF2) to be omitted or mixed-up. This replication error can happen at any time. In June 2021, we learned that Claire had NF2 as well. Neurofibromatosis 2 is characterized by non-cancerous tumors in the skull and along nerves. From a study we read, we learned that about 90% of cases of NF2 have bilateral inner-ear tumors (called schwannomas), about 50% have tumors of the brain lining (called meningiomas), and about 10% have other tumors. Claire has all three types, including approximately 8-10 meningiomas and a nerve sheath tumor outside the base of her skull.

NF2 can cause hearing loss, balance problems, changes in vision, headaches, seizures, numbness, or weakness, none of which Claire can tell us about. Fortunately, Claire is showing no symptoms at this time so we will monitor the situation as she ages.

The other big change is that she moved into a group home in January. She has six housemates, all of whom are older and higher-functioning than her, so they love her like a little sister. She comes back to our home and her dad's home regularly for overnight visits. This was a life-changing decision for all of us that we made after lots of careful thought. When we made the decision to start looking, it was a four month process before we found a good placement for her. It has been a welcome yet tough transition for her three parents and Claire hasn't seemed to mind at all.

Here's another attempt to get Claire to like her new egg chair. It was unsuccessful but she was adorable in it for a couple of seconds. (July 2020)
With Claire newly diagnosed with Phelan-McDermid Syndrome, we were referred to St. Vincent's Genetics department for genetic counseling. (July 2020)
We opted to do further genetic testing to learn more about the size of the deletion of her 22nd chromosome, whether or not she has any other genetic mutations, and whether or not she has Ring-22. Claire managed to tolerate her mask for almost three hours of meeting, waiting, and blood draws (but she was quick to pull it off when Mom wasn't looking). A few weeks later, her results told us that Claire does have Ring-22 but does not have any other detected genetic abnormalities. (July 2020)
Claire's dad took Claire and the grandkids to a park. Kelly loved helping out by pushing her Aunt Claire in her wheelchair. (September 2020)
Claire had her annual checkup and was a trooper about wearing her mask again. She only pulled it off a couple of times. (October 2020)
Claire sat on Tom's lap and got some help holding her bottle during breakfast. With the possibility of Claire moving to a group home, we were doing everything we could to get some extra weight on her. (December 2020)
We bought a class B RV that would work for traveling with Claire, just in case we needed to take her with us when we travel. Claire gave it a try and decided that her seat in the dinette area suited her just fine. (December 2020)
We had started the slow process of finding a group home for Claire in the fall. When a potential match was found in December, we had a virtual tour of the facility to see what we thought of it. (December 2020)
On Christmas, Claire stopped by for a quick hug, ..
... before chowing down on some peanut blossom cookies. (December 2020)
The next day, Claire enjoyed some lefse, the food of her people. It was from the last bag of lefse that our cousins in Wisconsin had given to Claire in February. That's good rationing right there. (December 2020)
The week after Christmas, Debbie brought Claire in and picked her up from her potential new group home. She was there to have dinner with the staff and residents to see how she would react. Everyone was very nice and two of the residents were especially fond of Claire. One told Debbie that she'd look after Claire for her, and another asked to be seated next to Claire at dinner and later asked Debbie when Claire could come back to visit again. (December 2020)
We took Claire to see Christmas Nights of Lights at the Indiana State Fair before it closed. She seemed to enjoy it and we sure did too. (January 2021)
Here's our sweet girl at her dentist appointment. The staff gave her some cool sunglasses to wear during her appointment. They didn't last long on her head. (January 2021)
A week later, she was at her doctor's office, getting lots of forms filled out to prepare for moving into her new group home. Over the previous month, she had done a dinner visit, an overnight visit, and a weekend visit, and was now ready for the next step of moving in. (January 2021)
The day before her move, we took lots of pictures of her. She got to have her favorite breadsticks from Fazoli's for dinner, ...
... and we took every opportunity to stuff some last-minute calories in her. (January 2021)
On moving day, we got all of her clothes put away in her dresser and closet, arranged the rest of her things around her room, and got our last hugs in before leaving her there. She seemed very unconcerned about it all, which made it easier on us. (January 2021)
Even though we were in a pandemic, we picked up Claire every weekend for an overnight visit, alternating weekends with her dad. Fortunately, she and her housemates had just gotten their first vaccination. Claire got to have a special dip in our swim spa before we drained it for the season. (February 2021)
When Claire visits her dad, his new puppy, Luca, likes to be right next to her. (February 2021)
When Claire comes home to visit, we like to take her to do something she enjoys. Here's her very favorite park.
She gets into the slide by sitting on Mom's lap, then Mom lowers her onto the slide.
There she goes! After four or five trips down the slide, she walked back to the van, indicating that she was done. (February 2021)
When Claire visits, she always gets to have Fazoli's breadsticks for dinner! (March 2021)
Our Claire was featured in the Phelan-McDermid Syndrome Foundation's April newsletter. This is a picture taken eight years ago, which is why it lists her age as 23. (April 2021)
We made a framed collage of photos to decorate Claire's room at her new home. (April 2021)
Here's our sweet girl in her room after a visit. (April 2021)
While we were on a road trip, Claire had a virtual neurology appointment. We called in from Pennsylvania while Claire participated for a few minutes from her group home, with the assistance of staff. (April 2021)
When Claire came home for an overnight visit, we thought she had taken her housemate's toy, but it turns out that her thoughtful caregivers bought her a toy just like it for her to keep. (April 2021)
Claire's first photo collage turned out so well that we made two more for the other walls in her room at her group home and put them up when we dropped her off after her visit. (April 2021)
Every picture features Claire with her family. (April 2021)
Every time Claire comes home to visit, she gets to take a relaxing bubble bath. She was home on a Thursday night ...
... because she had a very early morning hospital appointment the next day. (June 2021)
Claire got an MRI done of her head, and had to be fully sedated for the 45-minute procedure.
She did very well, and had no problems once she woke up. (June 2021)
Six days after Claire's MRI, we found her results on IU's patient portal, then went to IU to get a CD of the actual scans to see the findings for ourselves. After being diagnosed with 22q13 deletion in April 2020 and Ring-22 in September 2021, we knew there was a chance that she had neurofibromatosis type 2 (NF2). Her MRI confirmed it, showing bilateral inner ear tumors, approximately 10 tumors in her brain lining and a tumor outside the base of her skull. Fortunately, they are probably not malignant and none seem to be causing any side effects yet. This picture shows the two largest at the top of her skull. (June 2021)
Claire's room was starting to fill up with things she had acquired since living there. There's a canvas that the staff helped her paint, plus an Easter bag that contained new purple Crocs for her on Easter morning. (June 2021)
As a result of Claire's neurofibromatosis 2 diagnosis, she had an appointment with an ENT doctor who is an expert in NF2 and does research on NF2 treatments. (June 2021)
Claire's hearing was tested by placing her in a sound booth while the technician played sounds out of different speakers. She demonstrated that she still had basic hearing despite the tiny tumors in both inner ear canals. (June 2021)
On Claire's 32nd birthday, we brought her home for a visit and to participate in a virtual appointment with her neurologist. (July 2021)
Claire got to play with her special birthday cake musical toy and then brought it to her group home for a few days before it gets put back in storage for next year. (July 2021)
Claire's housemates celebrated her birthday with her after dinner. (July 2021)

2021 and beyond

Check Claire's page for more photos, and click here to see photos from the times she participated in Special Olympics when she was younger.

Claire's story is updated once per year, usually in late July.


Claire's Story: [1989] [1990] [1991] [1992] [1993] [1994] [1995] [1996] [1997] [1998] [1999] [2000] [2001] [2002] [2003] [2004] [2005] [2006] [2007] [2008] [2009] [2010] [2011] [2012] [2013] [2014] [2015] [2016] [2017] [2018] [2019] [2020]

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