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).
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.
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