Medical Expenses
Fundraising campaign by
Veronica Popa
-
€900.00Donated So Far
Hi! I'm Andreas-Rares and I'm 5 years old. I have been diagnosed with an extremely rare genetic syndrome called Allan-Herndon-Dudley ( MCT8 Deficiency). Doctors didn't give me much chances of anything when I was diagnosed but boy did I prove them wrong. I can sit and crawl; I laugh and I play; I place steps with help and I even go to the kindergarten!
I know my parents are very proud of my progress but I also know the effort and the expenses this progress came with: lots and lots of therapies, special equipment, experimental medication and a lot more.
The medication I'm taking increased its price four (4) times in the last year alone and that is my only chance of getting just a bit better. I'm growing out of some of the equipment I'm using and that will need changing and I need new splints for my legs.
Most importantly though, I met some doctors that promised they will figure out why I don't eat and maybe help me solve this problem. Their hospital is in a far country and we'll need to be there for a while so I guess that is going to be a big expense for my parents.
You can help me by donation and/or sharing this page with your friends.
Thank you!
Andreas-Rares
Organizer
- Veronica Popa
Donors
- Petra Montes
- Donated on Jan 09, 2019
Sending you love and a bit of help
- Anonymous
- Donated on Jan 03, 2019
And off we go!!
Update posted by Veronica Popa at 02:48 pmHi everyone, We're leaving for Slovenia tomorrow. We have an appointment for evaluation on Monday. After that we'll go to Animake's headquarters to have his legs/feet 3D scanned in the right vertical position. The next couple of days they will 3D print his orthotics and we will have fittings. Hopefully
New Custom Orthotics for Andreas-Rares
Update posted by Veronica Popa at 12:58 pmHi everyone! We're going to Slovenia!As we mentioned before, Andreas-Rares is a dire need of new leg orthotics.The ones we have are not usable anymore and every day without the proper support harms his legs further and decreases his chance of ever walking.The company we are in contact with will. . . . .
EURORDIS Photo Contest 2018
Update posted by Veronica Popa at 07:52 pmContinuing our every year's tradition, we have entered the EURORDIS Photo Award and this is our picture. https://woobox.com/8d28gb/gallery/Cgw0RP7aFBQ_______________________________________________________Not so good news...News aren’t always good so here comes a bad one. Our request for an initial evaluation at the hospital we intended to go to in the Netherlands has been rejected.
Donors & Comments
- Anonymous
- Donated on Feb 04, 2019
Esti o super mama pentru un super erou. Curaj!
- Petra Montes
- Donated on Jan 09, 2019
Sending you love and a bit of help
- Anonymous
- Donated on Jan 03, 2019
- Anonymous
- Donated on Dec 18, 2018
All the best, lot 's of luck, and have faith. Some times magical things happen :)
- Κατερίνα Παπαδοπουλου
- Donated on Dec 18, 2018
Andrea we wish you continue thriving despite your difficulties and we want to express our wish to meet you, and hug you and give you a little kiss. We are in Evosmos, so not far from you! Have a happy Xmas! With lots of love from your admirers, Georgia-Danae and mummy.
- Lucy Hatzi
- Donated on Dec 18, 2018
- Anonymous
- Donated on Dec 18, 2018
Good luck guys!
- Anonymous
- Donated on Dec 17, 2018
- remus neacsu
- Donated on Dec 14, 2018
- talaris kostas
- Donated on Dec 11, 2018
Esti o super mama pentru un super erou. Curaj!