The Isabel Jurado Foundation

The Isabel Jurado Foundation

Help for Today. Hope for Tomorrow.

 

 

 

Family Support
Contact the Isabel Jurado Foundation Mom's Daily Thoughts Frequently Asked Questions Sitemap

Part of the mission of the Isabel Jurado Foundation is to provide support to the families of MPS children. Financial grants are available from IJF and may be applied for by filling the Grant Application form, printing it and mailing to the Foundation.

Special Needs
There are many special needs families with MPS III children will face. Below we have listed a number of those needs.

Medical Bills Medical Equipment/Supplies

"I just want to say what a blessing it is not to have to worry about providing all of Jesse's supplements  for him while we are having a hard time financially. With the help of the Isabel Jurado Foundation we are able to keep Jesse healthy and happy during this difficult time. 
May God continue to Bless you all for the wonderful things you are doing for our family and others!"

In Love,
Patty, Jack and Jesse Taormino
Jesse
MPS III A - 12 years old

 

 

  • Co-Pays
  • Procedures not covered
  • Respite care
  • Diapers & wipes
  • Bath/shower chairs
  • Appropriate chew items
  • Special beds
  • Formula for tube feeds
  • Feeding/activity chairs
  • Orthotics (braces)
  • Adaptive clothing
  • Wheelchairs
  • Positioning equipment
Home Modifications
  • Wheelchair ramp
  • Dutch-doors for safe room
  • Fenced-in yard/area
  • Wheelchair accessible shower
  • Widening of door ways
These are just some examples. If you have any suggestions of items you would like us to add to our list, just write the Foundation via E-Mail. Thank you!
 
"Original door opening was 18"...it's now 35"!!! New roll-in shower that's longer and wider with ceramic tile for future lift/roll unit. Simply fantastic thanks to help from the Isabel Jurado Foundation!"
Karen Efird

Daniel Smalls has MPSIIIA"Thanks to The Foundation for your assistance with transportation to Daniel's medical appointments and respite care."
Stephanie Stewart, North Augusta, SC

Federal and State Resources

"I would like to send a huge thank you to the Isabel Jurado Foundation for helping our family. I didn't know where to turn for help and then you were there and I can't say thank you enough for everything you have done for us. Having two children with Sanfilippo is hard, but you have made it a little easier for us, HUGS!!!"   Alicia Bennett
TEFRA Option
Under Section 134 of the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) states are allowed to make Medicaid benefits available to children with severe disabilities regardless of their parent’s income or resources.

TEFRA Eligibility
Must be 18 years or younger; live at home; meet state’s SSI definition of disability; meet institutional level of care; estimated cost of caring for the child in the home does not exceed cost of treating the child in an institution.

The TEFRA Option is available in these states (as of 2006):

Alaska
California
Colorado
District of Columbia
Florida
Georgia
Idaho
Maine

Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Nebraska
Nevada

Oklahoma
Oregon
Rhode Island
South Carolina
South Dakota
Vermont
West Virginia
Wisconsin


New Jersey Trip
Leslie and Kelly flew to NJ in mid-July to help the Beg family during a medical procedure for one of their 3 daughters, all of whom have Sanfilippo Syndrome. Please keep Abeerah and the rest of the Beg family in your prayers. Click here to see some pictures from that trip.

The Beg family has 3 daughters with Sanfilippo Syndrome
Abeerah, Khansa and Zahra Beg live in New Jersey.

“I want to say my special thanks to Isabel Jurado Foundation who grant us with extra hours of respite help.”
Tayyaba Beg

Visit the Beg girls at www.helpourgirls.com

 

We are still developing this portion of the website and hope to have more information to share here very soon.

 

á