The Association for Retinopathy of 
Prematurity and Related Diseases

Practical Information for Parents and Caregivers

Most people are scared of the unknown. Your child's visual impairment seems frightening because you more than likely have little or no knowledge about visual impairment or blindness.

The resources and suggestions given here are meant to give you information that will be beneficial to you. Your goal should be to focus on making your child happy, self assured and inquisitive, just as you would do with any child. Early contact with parent groups may be one of the most important things you can do to help yourself with this goal.

The organizations and resources listed here will vary in their use of the terms visual impairment or blind, but all of them are eager to provide you with information. Read the small paragraph describing each to see which of these items would be most helpful to you now. Again, it is extremely beneficial to meet other parents of blind children and also to talk to adults who are blind.

Your best source of information regarding your child's vision is your pediatric ophthalmologist. The other resources included here are primarily educational.

THE MICROCHIP AND THE EYE

Recently, there has been information released regarding microchips to augment retinal function in diseases, primarily retinitis pigmentosa. These microchips are being investigated as part of a medical device study and the initial results are from the phase one study focusing on the safety of these devices. It appears that at least the device in the subretinal space is tolerated by the human eye.

As the purpose of the phase one trial is merely safety, we really cannot draw any conclusions in regards to retinal function from the current results. The current results only support the right of the chip manufacturers to proceed with phase two and phase three clinical trials. These trials will be focused on the efficacy of the implant relative to visual function. All of the chips, of which there are several different designs being brought to the marketplace, do require initial adult testing before any pediatric applications may be available.

We are very enthusiastic about the progress made in the area of microelectronics relative to these microchips, but there also are many other avenues of visual rehabilitation being addressed. In the biologic venue, stem cells, clone cells, and tissue manipulation are still being pursued. In the electronic areas, cortical implants are also being pursued. So there are a variety of options being examined for visual rehabilitation, which hopefully will yield useful results for adult and pediatric patients with blinding retinal diseases.

INFORMATION ABOUT FREE MEDICAL AIR TRAVEL

Air Lifeline (877) air-life or www.airlifeline.org

American Airlines- Miles for Kids (817) 931-6890 or (817) 963-8118
Twice in a lifetime free flights for child and both parents - leave message with all details (you must have access to a FAX machine)

Angel Flight

For non-emergency transportation for medical treatment done by geographical area within the U.S.

For specific regions and current phone numbers go to their website at: www.angelflightamerica.org/map.html

Delta Airlines - Skywish (877) 327-8211
Contact: Ruth Ann Robinson

Hope Air (Canada) 877-346-HOPE or mmail@hopeair.org

Mercy Medical Airlift (757) 318-9175

Miracle Flights for Kids: (800) FLY 1711

National Patient Air Transport Hotline
(800) 296-1217

Helps people find free or reduced rates for air travel for medical purposes. Available 24/7. mercymedical@erols.com

Northwest Airlines Request an Application:
Call (612) 726-4206 to request an application for KidCares travel. This would be the most likely source for those of you planning on coming to Detroit to see Dr. Trese or Dr. Capone.

Southwest Airlines (214) 792-4103 or (214) 904-4103
Contact: Tracie Martin
Twice a year for child and both parents

TWA Operation Lift Off (314) 895-5563
Contact: Liz Martin or Brian Zahorik

Virgin Atlantic (800) FLY-4-LES
Contact Ted Hollingsworth - Special Needs Dept.

For comprehensive listings, or to ask for travel information from a specific area you may also try: Air Care All

www.aircareall.org888-260-9707

PATIENTS WHOSE COMMERCIAL FLIGHTS TAKE 12 HOURS OR MORE SHOULD CONTACT THEIR TRAVEL AGENT AND ASK ABOUT ROUND-THE-WORLD RATES VERSUS RETURN FLIGHTS FROM DETROIT. LARGE SAVINGS MAY BE AVAILABLE WITH BETTER ACCOMMODATIONS (BUSINESS VS. ECONOMY CLASS TRAVEL).

The United Healthcare Children's Foundation (UHCCF) has announced
that new grants are available to help children who need critical
health care treatment, services, or equipment not covered or not
fully covered by their parents' health benefit plans. The foundation
aims to fill the gap between what medical services or items a child
needs and what their commercial health benefit plan will pay for.
UHCCF, a nonprofit 501(c)(3) charity, provides grants to families to
help pay for child health care services such as speech therapy,
physical therapy, occupational therapy sessions, prescriptions, and
medical equipment such as wheelchairs, orthotics, and eyeglasses.
Parents and legal guardians may apply for grants of up to $5,000 each
for child medical expenses and equipment by completing on on-line
application on the UHCCF Web site.

To be eligible for the grant, children must be 16 years or younger.
Families must meet economic guidelines, reside in the United States,
and be covered by a commercial health benefit plan. The family's
health care provider must submit a letter to the foundation that
defines the child's medical condition and supports what the family is
requesting. The family, however, must apply for the grant themselves.

For further information contact:  www.uhccf.org

 

Social Security (SSI) Information:

To learn if your family qualifies for SSI payments go to:  www.ssa.gov/pubs/10026.html

NATIONAL TELEPHONE SUPPORT GROUPS

 Tele-Support Groups for parents of children with visual impairment are open-ended, informative and supportive discussions of issues and topics of concern for parents raising children with visual impairment. These groups are composed of parents with children who have the same eye conditions. They are professionally facilitated and are offered at no cost to parents. They meet by phone on a weekly basis.

Registration

To register online go to: http://www.jgb.org/programs-parent-tele.asp

To request additional information, or to make a referral, please contact:

Daniel Callahan
Phone: 212-769-7815
E-mail: parent-groups@jgb.org

INFORMATION ABOUT FREE PHONE CALLS IN MICHIGAN

Free phone calls to other parents of visually impaired children or to your child's doctors are available by dialing:
(800) 359-3722. Calls are limited to 30 minutes.