NEW & NOTEWORTHY
IDCS STANDS WITH UKRAINE
APPLE WATCHES: If your child has an Apple Watch, we request that they not wear it to school.
TOYS/FIDGETS/POKEMON CARDS: Students should NOT bring toys, fidgets, or Pokemon cards to school. Items will be taken and held in the office if they are seen with students. Items will be sent home with students at the end of the day. If the student keeps bringing the items it, the parent will be asked to come in to pick them up. Thank you.
YEARBOOK:
MONTHLY PARENT MEETING: Thursday, May 12th @ 6:30 p.m.
Join Zoom Meeting
https://us02web.zoom.us/j/85775640883?pwd=UklhNFFEWkpIUVFwbS8zNGwyQm1EUT09
Meeting ID: 857 7564 0883 Passcode: FsD9na
SMALL SCHOOL: May 20, Small School: Pod C (Mrs. Strong, Mrs. Maletz, Mrs. McOmber, Ms. Bouregy, Ms. Grant, & Mrs. Cronin)
ANNUAL PICNIC: IDCS is returning to Harkness Memorial Park for our annual picnic this year. The picnic will take place on Thursday, June 16th. We are asking people to please drive if at all possible due to limited bus permits available. We will have 5 buses to transport students whose parents cannot attend/drive. SAVE THE DATE and celebrate with us on June 16th. IDEA provides hot dogs and buns and parent volunteers will take turns cooking on the grill. The rest of the food is potluck style; a sign up will be sent home closer to the picnic date.
SUMMER SCHOOL: Information will be coming home soon!
UPDATE ON JACK YON’S FAMILY: Jack Yon's family has made some progress and had some setbacks since the last update. Read on for an update from Jack’s Mom.
We found out that 3 additional family members have been identified as carrying this CTLA-4 gene mutation. Jack's grandmother passed away before he was born, due to complications from this genetic disease.
On behalf of our entire family we would like to thank Candice Flew, another IDCS Mom and advocate for Rare Disease, for the resources she sent us, one of them being Angel Flights of NE. They flew Catalina, Mom and Dad down to The children's hospital of Philadelphia at no cost to our family.
We have been fighting to get a new medication for Catalina approved through insurance since January, as this medication costs $4,000 a week. It was finally approved last Saturday after hundreds of hours being invested into this and even getting a letter from Congressman Joe Courtney, and we should be starting that very soon!
While at CHOP, the Immune Dysregulation Frontier Program sat with us for 5 hours going over Catalinas extension medical history. They seem to think that Catalina has 3 severe issues going on.
1) CTLA-4 Dysregulation which is causing her T-cells to attack healthy organs and tissues in her body.
2) Atypical Familial Mediterranean Fever which causes recurrent fevers and inflammation, which then triggers T-Cells to activate and causes the CTLA-4 Dysregulation to come more into play and thus causing chaos in her body.
3) A bleeding disorder that we still have not figured out.
The next step is to start her on injections once a week. Hopefully we will see improvement in 4-6 weeks. And can begin to wean her off the steroids. They did tell us that we need to mentally prepare ourselves for the real possibility that this medication does not work to the extent that we thought, and maybe not at all…which at that point, her team will come up with a new plan that hopefully does not involve steroids. She will also need to have a few procedures done in the near future, which will likely be done down at CHOP.
One real fact about CTLA-4 disorders is that some people need to under-go Bone marrow transplants when medications fail. We are hoping that is many many many years away, or not at all if this medication DOES work for her.
This whole experience has been exhausting for all of us. THANK YOU for following, donating and sharing our page!
Our donation page is....
https://www.mightycause.com/story/Teamatizol
Which also has links to our FB and Instagram pages.
Choose Kindness
2021/2022 IDCS Theme
IDCS students have been choosing kindness on a daily basis. We will be highlighting a few students (and maybe even some staff members) in every newsletter. Small acts of kindness add up!
Derek ~ Helped a friend from Mrs. Hawk’s class find a cup for water. Submitted by Ms. Grant
Micah, Avenna, Evelyn, & Lucas ~ Helped friends pick up their spilled bins. Submitted by Mrs. Murphy
Kaycee & Micah ~ Helped friends pick up their spilled pencils. Submitted by Mrs. Murphy
Colton ~ Helped a student clean up her spilled water. Submitted by Mrs. Murphy
Hannah ~ Picked up Miss Maggie’s pencils. Submitted by Mrs. Murphy
Mr. Matt ~ Helped Mrs. Rankowitz fix a pair of glasses for a student. Submitted by Mrs. Rankowitz
