Update, we have a meeting next week with State Representative Amy Elik!! I am hoping to get to 1,000 signatures before then. Thank you so much for being apart of this change for my daughter and kiddos like her.

Hello! My name is Sam Brewer and my daughter Rory (Aurora) has an extremely rare genetic disorder called Shashi-Pena Syndrome. She is one of only 80 worldwide. Due to this, she will need lifelong care.

I wanted to highlight a huge issue in our state that I’m hoping to change moving forward. We tried to get Rory a home health voucher through the DSCC (Division of Specialized Care for Children). This program works on a point system and you have to have 50 points to qualify for the benefits. They use points on hospitalizations, medical equipments, medication’s, daily care, but unfortunately, the way that the system is set up you can only be a certain type of disabled with a certain type of care need to qualify, which is incredibly wrong. Rory did not qualify (she only scored 24 points even thought she has continual around the clock care) and she would’ve if she was on reflux meds and had a continuous feed over six hours, but because the way her schedule is set up for her body, she does not qualify and therefore we get no help with nursing or things like wheelchair ramps, and other resources that are tremendously helpful to families like mine. Once we are home, I will be contacting our state representatives and pitching “Rory’s Bill” to hopefully change the way they deem children eligible for this program. I will be collecting signatures to show our state representative the support for this change. I would really appreciate it if you could sign and support to help families like mine. 

Below I listed Rory’s 24 hour care schedule. Dylan works full-time and overtime to help provide for our family since I am not able to work a normal job and have to be Rory’s around the clock caretaker. Due to her not qualifying for a at home nurse and her dad working all the time, I have not slept a full night since she was born. I now will probably sleep three hours at a time and this is something that family’s like mine should not have to go through because the state does not have a program set up properly. There is no excuse for this and it has to change. Thank you for reading all of this. I really do appreciate it and I will keep updated on this process. Please see below Rory’s daily schedule. 

4:00 am: Sugar check, tube feeding (food blends), medication administering (1 medication) 

8:00 am: tube feeding (food blends), medication administering (5 medications including inhalers)

10:00 am: tube feeding (water) 

12:00 pm: Sugar check, tube feeding (food blends), medication administering (1 medication)

2:00 pm: tube feeding (water) 

4:00 pm: Sugar check, tube feeding (food blends) 

6:00 pm: tube feeding (water) 

8:00 pm: Sugar check, tube feedings (food blends, medication administering (3 medications including inhaler)

12:00 am: tube feeding (food blends) 

(All tube feedings take 30 minutes, Rory has this schedule because this is the only way to keep her sugar stable and GI issues under control.) 

None of this includes her weekly therapy or multiple doctor appointments we have monthly, her emergency medications, our 911 procedures for seizures and low blood sugar, hospitalizations, and so much more. 

Therapy:

Monday: 1:00 pm in STL

Tuesday: 2:00 pm in STL

Wednesday: 11:00 am in STL

Thursday: 2:00 pm in Godfrey 

Vision Therapy: monthly

Doctors appointments: some weeks we have 1-2 appointments like this upcoming week. 

No parent of a disabled child should have to go without sleep or proper help because our system is broken, please help me be apart of that change.