Jen
  • Female
  • St. Petersburg, FL
  • United States
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About me:
I am currently in Pharmacy school @ University of Florida. My younger brother has Duchenne MD, he is 22. I live with my family right now and try to help as best as I can, but it's tough doing that and trying to attend and pass grad school. I am married and have a dog names Bella and a cat named Sophia.
About my family:
My mom is originally from Poland and my dad is originally from Czech Republic. They are still married and my mom's full time job is caring for my brother. She has no help and can't seem to find any either. It is frustrating that there is no help out there. We don't have much money and make the best of it. My dad works 7 days a week just to support the family so my mom only has to work part-time.
Name(s) of child(ren)/individual(s) with Duchenne:
Philip
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
St. Petersburg, FL

Jen's Blog

Looking for assistance in Florida

Posted on October 16, 2008 at 11:08pm 1 Comment

Hello, I am posting here to try to find some kind of help for my mom and dad. As you can see from my profile, I am facing many challenges here and need some guidance or advice. I'll give the background first. My brother is 22 and according to Florida laws and statutes, he does not qualify for any in-home assistance. He only had Medicaid and neither of my parents have health insurance so that is all he has. And as we all know, Medicaid pays for the minimum necessities needed to accommodate my… Continue

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At 1:51am on May 23, 2010, Leslie Guzman said…
Hi Jen,

We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...

Thanks for your kind attention to this,

Leslie
Here is my email and phone number: guzman.l@pg.com or (513) 765-9416
At 4:51pm on January 10, 2009, Zdenek said…
Ahoj Jen,
A rozumeš aj po slovensky?
Budem rád ked tu nájdem dalšieho priatela a nebudem si musieť lamať hlavu nad angličtinou ktorá mi moc nejde.
Volam sa Zdenek "andy" Haviernik a som otec 4,5 ročného Dannyho s DMD a 3 mes. Sammuela u ktorého ešte nevieme ako na tom bude.

pá a pozdrav zo srdca europy
At 8:04pm on November 20, 2008, Sheila & Dyllan Tanner said…
Hi Jen,
I'm new the community my son Dyllan is 10 with dmd.
We are not to far from you in Riverview, Fl .
I was wondering if you have checked the local MDA office for advice?
Take care!
At 10:01am on October 23, 2008, Julie Garcia said…
Hi Jen,

I wish you well in your schooling. It is a tough place for you to be in on this one. I see you have joined Florida families. You have posted your question in the Blog section. I would suggest asking in the Florida families group and sending an e-mail to each of them. You can do this by going into the Florida families and saying you want to e-mail all. Dee in Florida families may have some answers for you.

I am in California and each state varies. I am still learning what California does.

Good luck on this.

Take care,

Julie
At 4:39pm on October 10, 2008, Yenitza said…
My name is Yenitza and my brother is 20 years old maybe we could get to know each other so they can meet each other. My little brother is going thru a difficult time and unfortunately he doesnt have any friends.

I am glad you joined ;) God bless you and your family.
At 7:12pm on October 9, 2008, Jennifer Collier said…
Hi Jen,

Welcome to PPMD!! PLease join the Florida Families group!!! I would live to see you there!

-Jen
At 12:58pm on October 9, 2008, Kari said…
Welcome Jen to PPMD Community. If there is any help to be found, it is here. I am sorry it is so hard. Hang in there as best you can.
 
 
 

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