Isaiah and Mikah sports SpiritDomes, which designed a hat specifically for Isaiah.
One of our patients, Isaiah, recently came back to Children’s to donate $300 raised through sales of a hat specifically designed for him.
In 2008, Isaiah Peters arrived at Children’s – Minneapolis, after doctors in his home town of Sioux Falls, South Dakota, diagnosed him with hemolytic-uremic syndrome (HUS), a complication commonly associated with E. coli. While at Children’s, he spent 27 days on dialysis for total kidney failure and another seven days on life support, mostly in our PICU. Isaiah pulled through and was discharged.
While at a Christian music festival in September 2009, Isaiah’s family met the owner of a hat company called SpiritDomes. After hearing Isaiah’s story, the owner was inspired to make a hat specifically for Isaiah, with a verse from the Book of Isaiah (Chapter 40, Verse 31) inscribed under the hat’s brim. Since creating the hat, it has been SpiritDome’s top seller.
A new tribute recognition display, “Dedicated to Our Stars,” has been installed at Children’s – Minneapolis. Located outside of the Great Clips Sibling Play Area, the tribute display recognizes the generosity of individuals, families and organizations who have elected to support Children’s mission by making a philanthropic gift of $1,000 or more in honor of a loved one, in celebration of a meaningful milestone, or in remembrance of those who have touched our lives.
All tribute plaques that were formerly located on the first floor tribute wall were remade for the new display. Created in conjunction with Children’s Arts & Healing and Urban Renewal Project, the custom wallcovering used in the display is based on an original composition titled “The Boundary Waters Symphony Performing Ratspigi’s ‘Porcupines of Rome'” by St. Paul artist Dan Mackerman. An updated tribute display is currently being planned for Children’s – St. Paul.
We love to share our work in the community — how we work proactively to protect and care for the health of kids and families beyond our hospital walls — with our supporters. Recently, we developed a cool new way to showcase these successes online, too, with our new Help Us Help Kids page.
We were happy to have some very cool guests on Star Studio today! Members of KetzelCoatlicue, a learning community joined by the desire to learn, share and live the tradition of Aztec dance, were on Kids Clubhouse with The Dude.
KetzelCoatlicue, which means Precious Mother Earth, pursues this spiritual, mental, and physical vocation with music from the sacred drum, seeds and other instruments gifted by the natural environment. KetzelCoatlicueis a member of the Dance Board of the Fifth Sun located in Axochiapan, Morelos. A majority of the members are youth from south Minneapolis, but participating members range from toddlers to elders. The group’s learning center is located in south Minneapolis.
Through the Arts & Healing and Urban Renewal initiative at Children’s, we are integrating the arts with medicine to create inspirational healing journeys for the communities we serve.
On Friday, Children’s Cleft and Craniofacial Clinics hosted a Family Fun Day at the Kiwanis Boy Scout Camp in Marine on St. Croix. The day camp, attended by more than 30 cleft and craniofacial patient families, was an opportunity for campers to participate in activities like a challenge course, climbing wall, archery and canoeing. The campers were able to stretch the boundaries of their everyday activities, build self-esteem and make new friends. A big thank you to the Northern Star Council – Boy Scouts of America for graciously providing their camp for our families for a day, free of charge!
The PTATC, Aug. 4-7 at the Lifetime Fitness in White Bear Lake, is an annual tournament and is considered one of the premier, United States Tennis Association(USTA)-sanctioned, mixed doubles tennis tournaments.
The mission of the PTATC is to host an annual mixed doubles tennis tournament to raise funds that primarily support research to lessen the suffering caused by childhood cancer. All proceeds benefit the cancer research program at Children’s Hospitals and Clinics of Minnesota.
We need help on the morning of Sunday, Aug. 7, with registration, food and beverage, the water stop, and along the course. Timing would be about 7-10 a.m., depending on the task.
We’re also looking for help at the tournament. Our greatest need is on Thursday, Aug. 4, 4-6 p.m. or 6-8 p.m. and Saturday, Aug. 6, 11:30-1:30, 1:30-3:30 and 3:30-5:30. Tasks include ticket sales, food sales, merchandise sales, and clean-up.
Last week, Heather and Tim Gillen and their two children, Ally (12) and Nate (10), traveled to Washington, D.C., to meet with elected officials and to advocate on behalf of issues that are critical to children’s health.
The Gillens traveled as representatives of Children’s Hospitals and Clinics of Minnesota. Ally has been undergoing treatment at Children’s for Dermatomyositis, a rare and life-threatening auto-immune disease.
While in D.C., the Gillens met with members of Minnesota’s Congressional Delegation and asked them to protect two programs that are critical for children:
Medicaid – The single largest payer of children’s health care in the country, covering more than one in three children
Children’s Hospitals Graduate Medical Education Program (CHGME) – A program that is critical for providing support and training for pediatric specialists
The Gillens spent three days in the nation’s capital, and they sent back the following account of their journey:
July 23rd, 2011
We are here! The Gillens have arrived in Washington, D.C.! We are so excited to be here to represent Children’s Hospitals and Clinics of MN at NACHRI Family Advocacy Days.
July 24th, 2011
The morning started off with a visit to the Smithsonian Museum of Natural History. The building itself is breathtaking and the exhibits were amazing. Ally especially enjoyed the Egyptian mummy exhibit as she studied Egyptian history last year in school. Nate loved the mammals exhibit.
In the afternoon we attended the IMAX show, “Born to be Wild.” The show was about two extraordinary women who have devoted their lives to helping animals. One saved baby orangutans in Borneo and the other saved baby elephants in Kenya, all with the goal of restoring their health and returning them to the wild. As I watched the show I with struck with the thought that this is the reason we are here in DC. We are advocating for children so someday they too can grow up to be healthy and successful.
I have decided D.C. is a good place to be if you have Dermatomyositis like Ally does. She can stay out of the sun and in these cool marble buildings without worry.
Tomorrow we begin our NACH journey. We are excited to share our story and help make a difference for all kids.
July 25th, 2011
This morning began with our radio interview. Ally and I spoke with WYRQ-FM in Little Falls MN. We shared that we were in D.C. to represent Children’s and to put a face to critical issues, especially surrounding Medicaid and the Children’s Hospitals Graduate Medical Education Program.
We had a wonderful lunch with the other families. It was the first time we were all together and meeting other families from around the U.S. was amazing. Ally got to share her own personal NACHRI trading card with the other children in attendance. They had such fun trading cards and getting to know each other better.
In the afternoon we had a family briefing session about the legislative meetings the next day. After the meeting we had a special surprise guest – Miranda Cosgrove from the Nickelodeon Show “iCarly” came to sign autographs and have pictures taken with all the kids – so fun and exciting! The kids LOVED meeting a celebrity.
Afterwards we headed out for a tour of the Capital with special tickets from Rep. Paulson’s office. It was great to hear about all the behind-the-scenes facts about the Capitol building. It is a huge place and I do not know how you would not get lost there. I suppose it is kind of like the hospital and sooner or later you just figure it out.
Our evening concluded with a wonderful party sponsored by NACHRI for all the families. NACHRI sure knows how to make each and every one of these kids feel welcomed and special (siblings included). For Tim and I, it was nice to be able to talk with other families who have also experienced health care crises with their children. You often feel so alone, no one really understands, but in that room everyone in their own way completely understood.
Tomorrow is our big day! We hope that we can make a difference with our story the way families have for years before us. I keep thinking about the fact that 3 years ago, as we were experiencing our own life turning upside down, another family was in DC sharing their story and making a difference for us.
July 26th, 2011
Our morning started out bright and early with a great send-off breakfast. Everyone looked so great all dressed up and ready for their legislative visits.
We had a very full day of meetings including:
• Senator Klobuchar – This was our first meeting and the first time telling our story on Capitol Hill. Ally was a little shy and mom was a little teary eyed (I know, I am sure those of you who know me can’t believe I cried. I am just hoping the day will get easier each time we re-live the story). Good thing Dad was there to take over and help fill in the pieces. Senator Klobuchar invited us into her office and even had a Target Field book on her coffee table that she talked to the boys about (Nate keyed in on that right away).
• Representative Paulsen – We meet in Rep. Paulsen’s office and Ally again shared her story. The part of the story that Ally loves telling the most is about the therapy dogs and how they made such a difference for her. Ally brought along a scrapbook of her time in the hospital and the therapy dogs and Rep. Paulsen was especially interested to see what she had created. He asked questions and looked at all of her pictures.
• Representative McCollum – We meet with her Legislative Assistant and were briefly able to see Rep. McCollum before she left for another meeting. She was gracious and offered that if we needed anything while we were in DC to just let them know.
• Representative Walz – Who found a last minute break in his schedule to meet with us in person.
• Senator Franken – This was our last meeting of the day. For those of you who do not know, Senator Franken has his own office dog whose name is Blaine. He and Ally had an immediate connection. They both believe in the healing powers of our furry friends.
As our day came to a close, we were hopeful for the difference that our story and the stories of 39 other families doing this same thing on this same day in Washington DC might make as these lawmakers move forward with the tough choices regarding budget cuts.
We continue to hold tight to the fact that this happened to Ally for a reason and all of this is part of that plan.
Good night from D.C!
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